EXPLORING THE USE OF EMERGENCY HEALTH SERVICES FOR STROKE: WHAT IS KNOWN ABOUT WHEN TO SEEK EMERGENCY HELP AND HOW TRANSPORT DECISIONS IMPACT IN-HOSPITAL EMERGENCY CARE by Damanpreet K. Kandola BHSc., University of Northern British Columbia, 2011 MSc., University of Northern British Columbia, 2014 DISSERTATION SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY IN HEALTH SCIENCES UNIVERSITY OF NORTHERN BRITISH COLUMBIA June 2021 © Damanpreet K. Kandola, 2021 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA i Abstract Transport practices for seeking emergency stroke care remain largely underresearched and poorly understood, particularly for individuals living in small urban, rural, and remote regions. This multi-method study aims to address this knowledge gap and explores the impact of mode of transport on in-hospital stroke care and the decision-making process of seeking emergency medical attention for patients and their caregivers. Data from the Discharge Abstract Database provide information on stroke-related use of emergency health services across British Columbia. Data from the Canadian Institutes for Health Information Special Project 340 provide information on if calling emergency health services impacts the delivery of care, including the completion of neuroimaging, the administration of acute thrombolysis, and the prescription of antithrombotics upon discharge across a northern health region. Focused, semi-structured interviews provide contextual insight into the decision-making processes for seeking emergency stroke care among patient and caregiver participants in a northern health region. Stroke-related emergency health service use across British Columbia from January 2015 to March 2018 was 67.9% (N=19,849), ranging from 58.8% in Northern Health to 70.2% in Fraser Health. In Northern Health (N=784), there were differences between health service delivery areas for stroke-related emergency health service use ranging from 53.7% in the Northwest to 64.8% in the Northern Interior from January 2015 to March 2018. Similar differences in thrombolytic therapy administration and the prescription of antithrombotics were noted. The odds of emergency health service use were greater for those 65 years of age and older than those younger than 65 and lower for those in the Northwest health service delivery area than those in the Northern Interior health service delivery area. Differences EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA ii were found for the completion of neuroimaging between males and females. Interviews for patient (n=12) and caregiver (n=7) participants provide complementary contextual insights and yielded three key themes, including the decision-making process following a stroke, experiences of care, and perceived gaps and areas in need of further support. This integrated knowledge translation-informed and practice-driven research addresses health services and policy priorities. Findings are anticipated to help inform the development and refinement of emergency health services in British Columbia by highlighting differences in emergency health services use across geographies and identifying factors that inform patient decisionmaking when seeking emergency medical attention. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA iii Lay Summary Stroke is a leading cause of death and disability in Canada. Scientists have observed that people who suffer a stroke and are transported to the hospital by ambulance have lower rates of death and better outcomes, including lower rates of disability. Because of this, campaigns like Face Arms Speech Time (F.A.S.T.) have been created to increase public awareness of stroke symptoms and what to do in the event of a stroke. Still, we know many people have a stroke and do not use an ambulance to get to the hospital. Instead, they choose to wait for symptoms to go away, drive themselves, or get others to drive them. It is unclear how the mode of transportation to the hospital, especially outside a large metropolitan city, affects one's medical care, as most research studies on this topic are focused on urban populations. This represents an important gap in current knowledge because we do not fully understand the factors or effects associated with calling an ambulance in the event of a stroke, specifically for those in small urban or rural areas. The purpose of this study was to understand why (or why not) people call an ambulance when they or someone in their care is having a stroke and how calling an ambulance affects the medical care they receive in the hospital. To answer these questions, two different hospital-based datasets were used to determine differences in ambulance use for stroke across British Columbia. In a smaller subset of the sample, it was determined if coming by ambulance (or not) and patient sex affected the stroke treatment received, including a brain scan, thrombolytics also called clot-busting drugs, and antithrombotics, also called anti-clot formation therapy. To understand the decision-making process of seeking medical attention following a stroke, stroke survivors and some of their caregivers living in northern British Columbia were interviewed. The use of ambulance services for stroke across EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA iv British Columbia was 67.9% and ranged from 58.8% in the Northern Health region to 70.2% in the Fraser Health region. In the Northern Health region (N=784) there were differences across the three health service areas for stroke-related ambulance use ranging from 53.7% in the Northwest to 64.8% in the Northern Interior. Similar differences in the administration of thrombolytics and the prescription of antithrombotic therapies in these regions were also noted. Being 65 years of age or older and health region were found to predict the level of ambulance use. Differences in the completion of brain imaging between males and females were also found. Interviews with 12 stroke survivors and seven caregivers provided information into the decision-making process following stroke and revealed three key themes, including decision-making, experiences of care, and perceived gaps and areas in need of further support. The results of this study will be important for people at risk for stroke, their caregivers, and the general public to understand why it is important to call an ambulance when a stroke is happening. This research is also important for health organizations that can use information from this work to improve services and refine public awareness campaigns to encourage more people with stroke to seek prompt emergency medical attention. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA v Table of Contents Abstract ..................................................................................................................................... i Lay Summary ......................................................................................................................... iii List of Appendices .................................................................................................................. xi List of Figures ........................................................................................................................ xii List of Tables ........................................................................................................................ xiii Glossary .............................................................................................................................. xiv List of Abbreviations .......................................................................................................... xvi Acknowledgment ................................................................................................................ xviii Dedication ............................................................................................................................. xix Preface .....................................................................................................................................xx Chapter One: Introduction .....................................................................................................1 Background and Epidemiology of Stroke in Canada .............................................................4 Pathophysiology and Risk ......................................................................................................5 Transient Ischemic Attack ................................................................................................. 5 Stroke ................................................................................................................................. 7 Ischemic Stroke. ...........................................................................................................11 Hemorrhagic Stroke. ....................................................................................................12 Clinical Presentation ............................................................................................................13 Risk Factors and Risk Reduction .........................................................................................14 Non-modifiable Risk Factors........................................................................................... 15 Age. ..............................................................................................................................15 Sex................................................................................................................................15 Ethnicity. ......................................................................................................................16 Family History and/or Prior Personal History. ............................................................17 Modifiable Risk Factors .................................................................................................. 18 Hypertension. ...............................................................................................................18 Diabetes Mellitus. ........................................................................................................18 Obesity. ........................................................................................................................19 Cardiovascular Disease. ...............................................................................................20 Obstructive Sleep Apnea..............................................................................................21 Cigarette Smoking. ......................................................................................................21 Substance Use Disorders..............................................................................................22 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA vi Migraine. ......................................................................................................................23 Sex-specific Modifiable Risk Factors. .........................................................................24 Oral Contraceptives. ............................................................................................... 25 Pregnancy. ............................................................................................................... 26 Menopause. ............................................................................................................. 26 Stroke Risk Reduction ..................................................................................................... 27 Clinical Management and Diagnosis....................................................................................28 Diagnosis and Management ............................................................................................. 29 Prehospital and Emergency Health Services Care. ......................................................31 Emergency Department Evaluation. ............................................................................32 Initial Evaluation. .................................................................................................... 32 Diagnostic Imaging. ................................................................................................ 32 Thrombolytic Therapy. ........................................................................................... 33 Endovascular Thrombectomy. ................................................................................ 35 Neuroprotectants. .........................................................................................................36 Using Emergency Health Services for Transport to Hospital in an Acute Stroke Event .....37 Presentation Delay ........................................................................................................... 39 A Rural and Equity Lens on Stroke Care .............................................................................40 Summary ..............................................................................................................................43 Chapter Two: Literature Review .........................................................................................44 Problem Formulation............................................................................................................44 Literature Search ..................................................................................................................44 Inclusion and Exclusion Criteria ..................................................................................... 47 Data Evaluation ....................................................................................................................47 Data Analysis. ..............................................................................................................48 Review Findings ...................................................................................................................50 Association of EHS Use with In-hospital Care ............................................................... 50 Time to Assessment. ....................................................................................................50 Time to Neuroimaging and the Administration of Thrombolytic Therapy. ................52 Determinants of EHS Use ................................................................................................ 64 Factors Influencing Presentation Delay ........................................................................... 76 Awareness and Knowledge of Stroke Symptoms. .......................................................77 Decision-making Following Stroke. ............................................................................81 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA vii Resource-related Factors. .............................................................................................84 Key Findings and Gaps in the Existing Literature ...............................................................88 Limitations ....................................................................................................................... 94 Summary ..............................................................................................................................94 Chapter Three: Methodology and Methods ........................................................................96 Context .................................................................................................................................96 Setting .............................................................................................................................. 98 Purpose ...............................................................................................................................104 Rationale.............................................................................................................................105 Study Questions..................................................................................................................107 Theoretical Orientation ......................................................................................................108 Project Development and Roles .................................................................................... 109 Research Design .................................................................................................................111 Differentiating Multi and Mixed-Method Research ...................................................... 112 Philosophical Foundations ............................................................................................. 113 Quantitative Research Approaches. ...........................................................................115 Qualitative Research Approaches. .............................................................................118 Methods ..............................................................................................................................122 Quantitative Phases........................................................................................................ 123 Phase A. .....................................................................................................................123 Data Collection. .................................................................................................... 123 Data Cleaning........................................................................................................ 124 Data Analysis. ....................................................................................................... 127 Phase B.......................................................................................................................128 Data Source. .......................................................................................................... 128 Data Collection. .................................................................................................... 128 Data Cleaning........................................................................................................ 129 Data Analysis. ....................................................................................................... 132 Qualitative Phase ........................................................................................................... 135 Phase C.......................................................................................................................135 Recruitment and Study Sample. ............................................................................ 138 Inclusion and Exclusion Criteria. .......................................................................... 138 Data Collection. .................................................................................................... 139 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA viii Data Analysis. ....................................................................................................... 142 Rigor and Quality .......................................................................................................... 143 Quantitative. ...............................................................................................................144 Qualitative. .................................................................................................................147 Triangulation. ........................................................................................................ 150 Ethical and Privacy Considerations ............................................................................... 153 Ethical Considerations. ..............................................................................................153 Patient Confidentiality and Data Management. .................................................... 155 Summary ............................................................................................................................156 Chapter Four: The Use of Emergency Health Services for Stroke Across British Columbia and the Impact of Mode of Transport and Patient Sex on the Receipt of Emergency Care in Northern British Columbia ...............................................................158 Phase A: The Use of Emergency Health Services for Stroke Across British Columbia ...158 Emergency Health Service Use for Stroke by Regional Health Authority ................... 159 Emergency Health Service Use for Stroke by Health Service Delivery Area ............... 160 Phase B: The Impact of Mode of Transport to Hospital on Patient Receipt of Emergency Stroke Care in Northern British Columbia .........................................................................164 Northern Health ............................................................................................................. 164 Northern Interior HSDA. ...........................................................................................165 Northwest HSDA. ......................................................................................................166 Northeast HSDA. .......................................................................................................167 Summary of HSDAs. .................................................................................................168 Emergency Health Service Use for Stroke by Facility .................................................. 171 University Hospital of Northern British Columbia....................................................171 G.R. Baker Memorial Hospital. .................................................................................172 Mills Memorial Hospital. ...........................................................................................172 Prince Rupert Regional Hospital. ..............................................................................173 Fort St. John Hospital and Peace Villa. .....................................................................174 Dawson Creek and District Hospital..........................................................................175 Summary of Facilities. ...............................................................................................175 Mode of Hospital Arrival and Receipt of Stroke Care .................................................. 179 Sex-based Analysis for the Receipt of Stroke Care ....................................................... 179 Predictors of EHS Use ................................................................................................... 180 Summary ............................................................................................................................181 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA ix Chapter Five: Exploring the Decision-making Process for Seeking Emergency Care Among Stroke Survivors and their Caregivers in Northern British Columbia .............183 Theme One: Decision-making Process for Seeking Emergency Medical Care .................186 Deciphering Symptoms ................................................................................................. 187 Perceived Seriousness and Duration of Symptoms ....................................................... 192 The Influence and Impact of Others .............................................................................. 194 Unwillingness to Seek Care ........................................................................................... 197 Theme Two: Experiences of Care ......................................................................................198 Pre-hospital Care ........................................................................................................... 198 In-hospital Care ............................................................................................................. 201 Advocacy ....................................................................................................................... 206 Theme Three: Perceived Gaps in Care and Areas in Need of Further Support .................212 Mental Health ................................................................................................................ 213 Rehabilitation................................................................................................................. 215 Education ....................................................................................................................... 217 Life Following Stroke .................................................................................................... 221 Summary ............................................................................................................................224 Chapter Six: Discussion .......................................................................................................225 Phase A: The Use of EHS for Stroke Across British Columbia ........................................225 Phase B: The Impact of Mode of Transport to Hospital on Patient Receipt of Emergency Stroke Care in Northern British Columbia .........................................................................236 Phase C: Exploring Barriers and Facilitators to Initiating the Use of EHS for Transport to the Hospital Among Stroke Survivors and their Caregivers in Northern British Columbia ............................................................................................................................................249 Decision-making Process for Seeking Emergency Medical Care ................................. 251 Experiences of Care ....................................................................................................... 255 Perceived Gaps and Areas in Need of Further Support ................................................. 258 Study Strengths and Limitations. ...............................................................................265 Phase A. ................................................................................................................ 266 Phase B.................................................................................................................. 267 Phase C.................................................................................................................. 268 Recommendations ..............................................................................................................270 Recommendations for Research .................................................................................... 270 Recommendations for Practice ...................................................................................... 276 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA x Recommendations for Policy......................................................................................... 280 Knowledge Translation ......................................................................................................290 End-of-grant Knowledge Translation ............................................................................ 291 Chapter Seven: Conclusion .................................................................................................293 Significance Statement .......................................................................................................293 Conclusion..........................................................................................................................296 References .............................................................................................................................298 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA xi List of Appendices Appendix A: British Columbia Acute Stroke Tiers of Service Model .................................342 Appendix B: International Classification of Diseases-10 Stroke Codes ..............................343 Appendix C: Discharge Abstract Database Data Elements for Acute Inpatients .................344 Appendix D: Data Fields in Canadian Institutes for Health Information Stroke Special Project 340 .............................................................................................................................346 Appendix E: Interview Guide ...............................................................................................347 Appendix F: Recruitment Poster ..........................................................................................348 Appendix G: Information Letter and Consent Form ............................................................349 Appendix H: Tri-Council Policy Statement 2.0 Certificate of Completion .........................358 Appendix I: University of Northern British Columbia Research Ethics Approval Certificate ................................................................................................................................................359 Appendix J: Northern Health Research Ethics Letter ..........................................................363 Appendix K: Concept Mapping for Qualitative Interviews in Phase C ...............................364 Appendix L: Sample Knowledge Translation Outputs.........................................................367 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA xii List of Figures Figure 1: Timeline of Some of the Major Developments in the History of Stroke Before the 20th Century...............................................................................................................................8 Figure 2: Classification and Causes of Ischemic versus Hemorrhagic Stroke .......................10 Figure 3: Transitions in Stroke Care .......................................................................................30 Figure 4: Literature Search Strategy Based on the PRISMA Flow Diagram Format.............49 Figure 5: Possible Responses to Symptoms of Acute Stroke .................................................92 Figure 6: Regional Health Authorities in British Columbia ...................................................99 Figure 7: Health Service Delivery Areas in British Columbia .............................................100 Figure 8: Data Cleaning Process for Phase A .......................................................................126 Figure 9: Data Cleaning Process for Phase B .......................................................................131 Figure 10: Triangulation and Integration Approach .............................................................153 Figure 11: Emergency Health Service Use for Stroke by Regional Health Authority in British Columbia Based on Emergency Stroke Admissions from the Discharge Abstracts Database from January 2015 to March 2018 (N=19,849)......................................................159 Figure 12: Themes and Subthemes from the Patient Participant and Caregiver Participant Interviews (N=19) ..................................................................................................................185 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA xiii List of Tables Table 1: Prenotification and the Impact on Key Stroke Care Indicators (n=10) ....................59 Table 2: Determinants of Emergency Health Service Use for Stroke (n=9) ..........................74 Table 3: Factors Influencing Presentation Delay for Stroke (n=9) .........................................86 Table 4: Population Served and Geography Covered by Each Regional Health Authority in British Columbia ....................................................................................................................101 Table 5: A Comparison of Positivist and Interpretivist Paradigms ......................................121 Table 6: Emergency Health Service Use for Stroke in British Columbia Based on Emergency Stroke Admissions from the Discharge Abstracts Database from January 2015 to March 2018 (N=19,849) ........................................................................................................162 Table 7: Stroke Across Northern Health Based on Emergency Stroke Admissions from the Canadian Institutes for Health Information Stroke Special Project 340 from January 2015 to December 2018 (N=784) .......................................................................................................169 Table 8: Stroke Across Northern Health Facilities with Neuroimaging Based on Emergency Stroke Admissions from the Canadian Institutes for Health Information Stroke Special Project 340 from January 2015 to December 2018 (N=784) .................................................177 Table 9: Binary Logistic Regression Model for Predictors of Emergency Health Service Use in Northern Health Based on Emergency Stroke Admissions from the Canadian Institutes for Health Information Stroke Special Project 340 from January 2015 to December 2018 (N=784) ..................................................................................................................................181 Table 10: Patient Participant Interviewee Characteristics (N=12) ........................................184 Table 11: Summary of Audience-specific Knowledge Translation Outputs ........................292 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA xiv Glossary Acute stroke care: care provided in the first days to weeks after a stroke. Antithrombotic: medication to prevent the formation of blood clots. Atrial fibrillation: also known as AF or Afib, is the most common form of arrhythmia. It is an abnormal, irregular, and rapid heartbeat that can cause symptoms like heart palpitations, shortness of breath, and fatigue. Aphasia: language impairment caused by brain injury (most commonly stroke) that affects the production or comprehension of speech and the ability to read or write. Atherothrombotic: formation of a blood clot in an artery due to atherosclerosis. Atherosclerosis: a disease of the arteries characterized by the deposition of plaques and fatty material in the inner arterial walls leading to a hardening and narrowing of the arteries. Endovascular thrombectomy: non-surgical procedure for the removal of a blood clot in stroke. F.A.S.T.: The Face, Speech, Arms, Time (F.A.S.T.) public health stroke awareness campaign. Health service delivery area: mutually exclusive and exhaustive classification of land area in BC that fits within the geographical hierarchy structure of a health authority. Hematoma: an abnormal collection of blood outside of a blood vessel. Hemorrhagic: a profuse discharge (bleeding) of blood from a ruptured blood vessel. Hyperacute stroke care: care provided in the first several hours after stroke, involves prehospital and emergency department care. Integrated knowledge translation: a model of collaborative research in which researchers work with knowledge users to identify a problem and have the authority to implement research recommendations. Intra-cranial: area within the skull. Intra-cerebral: area within the brain. Ischemia: the reduced flow of blood, insufficient to meet metabolic demand. Ischemic: deficient supply of blood to a part of the body such as the heart or brain. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA xv Neuroimaging: imaging of the brain. Neuroprotectant: medication to alter metabolic events following ischemic stroke, including the potential to limit brain cell death. Northern Health: publicly funded healthcare provider for the northern half of British Columbia. Thrombolytic therapy (or thrombolysis): treatment to dissolve blood clot(s) to restore blood flow and prevent damage to tissues and organs. Thrombus: clot. Transient ischemic attack: sometimes referred to as a ‘mini-stroke.’. A temporary period of disruption in blood supply to part of the part not causing permanent damage. Lasts less than 24 hours and involves experiencing symptoms similar to those of stroke. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA xvi List of Abbreviations AF – Atrial fibrillation AHA – American Heart Association ASA – American Stroke Association ASC – American Society of Cardiology ASPECTS – Alberta Stroke Program Early Computed Tomography Score BC – British Columbia BCAS- British Columbia Ambulance Service BCEHS- British Columbia Emergency Health Services BC SUPPORT Unit – British Columbia SUpport for People and Patient-Oriented Research Trials CIHI – Canadian Institutes for Health Information CIHR – Canadian Institutes of Health Research CT – computed tomography CPSS – Cincinnati Prehospital Stroke Scale DAD – Discharge Abstracts Database ED – Emergency department EHS – Emergency health services ESC – European Society of Cardiology EVT – Endovascular thrombectomy EXTEND - Extending the Time for Thrombolysis in Emergency Neurological Deficits FRONTIER – Field Randomization of NA-1 Therapy in Early Responders GPAC - Guidelines and Protocols Advisory Committee GWTG – Get with the Guidelines, stroke program based in the United States EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA xvii HSDA – Health service delivery area IKT – Integrated knowledge translation INTERSTROKE – an international, multi-centre case-control study examining stroke risk factors MRI – Magnetic resonance imaging NCCT – Non-contrast computed tomography NIHSS – National Institutes of Stroke Scale PTN- Patient Transfer Network SPOR – Strategy for People and Patient-Oriented Research SRE – Secure Research Environment TCPS – Tri-Council Policy Statement tPA - Tissue plasminogen activator U.S FDA – United States Food and Drug Administration VPN – Virtual private network WAKE-UP – a multi-centre, randomized, double-blind, placebo-controlled clinical trial examining the efficacy and safety of MRI-based thrombolysis in Wake-up Stroke EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA xviii Acknowledgment I am extremely grateful to have the opportunity to the opportunity to study, work, and complete this research on the traditional territory of the Lheidli T’enneh, part of the Dakelh (Carrier) First Nations. ‘It takes a village’, this holds true for the journey to a Ph.D. While it was my research, this work would not have been possible without the collective efforts of many individuals I encountered throughout the process. First, to those who so willingly shared their stories of lived experience, I am eternally grateful for the opportunity to have heard your stories and for the tremendous privilege to work with you. To my supervisor, Dr. Banner, who I have had the incredible opportunity to work with through the last several years. Thank you for at times seeing what I did not see in myself and pushing me to beyond my comfort zones to become a better researcher. Your kindness, spirit of collaboration, knowledge, and dedication to your field will always continue to inspire me. To members of my dissertation committee, Drs Snadden, Pelletier, and Freeman, and Ms. Ramsay who graciously provided their time, valuable insights, and support along the process. I learned so much from each of you and for that I am forever grateful. To Dr. Payne for your support and encouragement during the early years of this journey and to Dr. Green for serving as the external examiner. To my patient partner Barb, thank you. You have been so gracious and provided me with so much insight into the world of stroke survivors and recovery. It has been a remarkable privilege to witness your inspirational journey of recovery and hope. To the tireless healthcare heroes, nurses, physicians, allied health, and support staff who work every day to provide the best possible care to their patients. To my advisors at Stroke Services BC, BCEHS, BC Emergency Medicine Network, and analysts at Population Data BC and Northern Health Health Information Management Services who were at the ready to help answer my many questions and queries along the way. To the Northern Health Authority, including Dr. Place and KM, for their support throughout my year as a CIHR Northern Health as a Health System Impact Fellow. To the support staff at the University of Northern British Columbia including the Office of Research, Graduate Programs, Finance, Contracts, the Health Research Institute, Barry at the Copy Centre, IT Services, maintenance and campus coffee shops, and Dr. Fyfe. To my incredible cohort LK, MZ, and SJ. Whether it was our early days of seminar and comprehensive exam process, our monthly get-togethers, providing feedback on early research ideas, or advice throughout the trials and tribulations, I am privileged to have gone through this learning journey with each of you. Finally, I could not have done this without the incredible support of my family and friends. Thank you for coming along on this rollercoaster of a ride. To my parents, who nurtured my curiosity as a child and would bring home volumes of encyclopedias, before I even knew how to read. To my mum, aunt, and sisters for their unwavering and unconditional support throughout the process and for always willingly offering a listening ear even though I know, it did not always make sense. You have earned this degree right along with me. Funding. This work was supported by UNBC Research Project Awards (2017, 2019), CIHR Travel Awards (2018, 2019), and a Northern Health Canadian Institutes of Health Research (CIHR) Health System Impact Fellowship (2018). I would also like to acknowledge the Heart and Stroke Foundation of Canada, the BC SUpport Unit, the Michael Smith Foundation for Health Research, the Rural Health Services Research Network of BC, the Libin Cardiovascular Institute, and CIHR’s Institute of Health Services and Policy Research, Gender and Health, and Institute of Health Services and Policy for their generosity in providing support and funding for travel and training opportunities that have played a key role in enriching my Ph.D. experience. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA xix Dedication To my family, especially my ਨਾਨੀ ਜੀ (grandma), ਜਸਵੰਤ ਕੌਰ. She was one of my biggest inspirations to start working in stroke research, my loudest cheerleader, and was so incredibly excited when I embarked on this journey. Sadly, she did not get to see me complete it and passed a few months before I handed my dissertation in. Though she did leave me with clear instructions on making sure I celebrated by ordering her favorite cake and sharing it with those closest to her. I hope I have made her proud. D.G.N. On to the next chapter… EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA xx Preface This dissertation is organized into chapters. Chapter One begins with the background and an introduction to the epidemiology of stroke. This is followed by an overview of stroke pathophysiology. This leads to a discussion on clinical presentation followed by a review of risk factors, both modifiable and non-modifiable, and risk reduction. Following this is a discussion on clinical management and diagnosis, including prehospital care, emergency care, and the use of emergency health services for transport to the hospital for stroke. Finally, a high-level discussion on inequities and disparities in stroke care is provided followed by a brief summary of the chapter. Chapter Two provides an overview of key literature on the role and use of emergency health services (EHS) for acute stroke. It begins with detailing the scope and review methods. This is followed by the review findings, including the literature concerning the association of emergency health services use and in-hospital care, including the time to neuroimaging and time to administration of thrombolytic therapy. Next is a review of the literature on determinants of EHS use for acute stroke. This is followed by a review of the literature on factors influencing patient presentation during an acute stroke event. Finally, there is a summative discussion of the reviewed literature, including gaps in the field and implications for future research. The chapter ends with a summary of the main conclusions drawn from the reviewed literature. Chapter Three provides an overview of the methodology and methods. Following a brief introduction, the context for the work is provided. This is followed by a discussion of the purpose, rationale, and study questions. The theoretical orientation, including an overview of project development and roles, is outlined. The research design is then discussed, including differentiating between multi and mixed-methods research and the philosophical foundations of quantitative and qualitative approaches. This is followed by the details for the methods of each study phase. Next, ethical considerations, including ethics approval, patient consent and confidentiality, and data management practices are outlined. The chapter concludes with a summary of the main points. Chapter Four provides an overview of the findings for this work with data presented by phase. First, data on provincial use of EHS is provided by the regional health authority and health service delivery area. This is followed by a more detailed examination of arrival by EHS rates across the Northern Health region, including each of the health service delivery areas and the six sites with neuroimaging capabilities. Differences in key indicators, including rates of brain imaging completion, administration of thrombolytic therapy, and prescription of antithrombotics upon discharge are provided based on the mode of arrival to the emergency department and patient sex. Following this, the results of binary logistic regression exploring predictors of EHS are presented. The chapter concludes with a summary of the main points. Chapter Five presents the findings from qualitative interviews with patient and caregiver participants on the factors involved in the decision-making process for initiating the use of EHS for stroke. This is presented by theme. The first theme explores the barriers and facilitators to calling EHS services for transport to the emergency department. This is further explored by four sub-themes, including symptom awareness, the perceived seriousness of symptoms, and the impact of others, and an unwillingness to seek care. Following this, the second theme of experiences of care, including the sub-themes of pre-hospital and in-hospital EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA xxi care is presented. Finally, the third theme of perceived gaps and areas in need of further support is presented, including the subthemes of mental health, rehabilitation, education, caregiver supports, and life post-stroke. Chapter Six provides a discussion of the findings within the context of existing literature. The discussion is framed specific to each phase of the work beginning with provincial EHS use for stroke. This is followed by a more detailed look at the findings for Northern Health, including EHS for stroke and the impact of patient sex on receipt of stroke care as it relates to what is already known on this topic. This is then followed by a discussion on the findings related to the decision-making process for seeking emergency stroke care, including barriers and facilitators. The chapter concludes with recommendations for future research, practice, and policy as well as an overview of the knowledge translation strategy. The final chapter, Chapter Seven, provides a succinct and high-level summary of this research. This includes a statement on the significance of the work and finally concluding remarks are presented. Disclaimer: All inferences, opinions, and conclusions drawn in this dissertation are those of the author, and do not reflect the opinions or policies of the Data Steward(s). EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 1 Chapter One: Introduction Worldwide, there are an estimated 15 million strokes per year (World Heart Federation, 2016). Of these, 40% of people will die, while a further five million are left permanently disabled (World Heart Federation, 2016; World Health Organization, 2017). Globally, stroke is the second leading cause of death for those 60 years of age and older (World Heart Federation, 2016). In some Western countries, including Canada, the incidence of stroke is rising at a much faster rate among young adults as compared to older adults (Bejot, 2016; Heart & Stroke Foundation of Canada, 2017). For instance, approximately 15% of all ischemic strokes occur in adolescents or young adults (Caplan, 2016). To put the burden of stroke in perspective, every two seconds, someone somewhere in the world is having a stroke, and every ten seconds, someone is dying as a result (Truelsen et al., 2007; World Health Organization, 2005; World Stroke Campaign, 2017). Thus, stroke is a serious and costly public health concern with wide-reaching implications. The incidence of stroke is projected to rise dramatically in the coming years due to a multitude of factors. These include increasing rates of chronic diseases, such as diabetes mellitus, a higher prevalence of risk factors, such as atrial fibrillation and hypertension, and the overall rapid aging of populations worldwide (Carandang et al., 2006; Benjamin et al., 2017; Feign, 2019; Fuster et al., 2011; Johnson et al., 2019; Santulli, 2013). From an epidemiological perspective, there is a growing trend towards the presence of multiple complex chronic diseases, which further escalates the risks and complications of stroke (Fuster & Kelly, 2010). Stroke is a medical emergency; early access to imaging and brain reperfusion is critical for optimal patient outcomes (Caplan 2016; Heart & Stroke Foundation of Canada EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 2 2017). Of note, there is emerging evidence demonstrating that patients with stroke transported by emergency health services (EHS) have lower rates of death and disability (Canadian Stroke Best Practices, 2015; Di Legge et al., 2012). Moreover, given the potential surrounding newer, novel, and upcoming therapies, including the pre-hospital administration of neuroprotectants and advances in endovascular thrombectomy (EVT), it is important that in the event of a stroke, individuals make use of EHS to ensure rapid access to these timesensitive medical interventions. From a public health perspective, considerable resources, both financial and otherwise, have been invested in stroke awareness initiatives, such as the Heart and Stroke Foundation of Canada’s Face Arms Speech Time (F.A.S.T.) program, focused on increasing awareness of stroke symptoms (Heart & Stroke Foundation of Canada, 2017). Despite the substantial investment in such campaigns, a lack of early symptom recognition and the limited mobilization of EHS for transport are key barriers that impact patient receipt of timely and evidence-based stroke care (Dawson et al., 2016; De Silva et al., 2007; Flynn et al., 2014; Hickey et al., 2018; Howard et al., 2008). This is concerning as early recognition is critical to initiating the use of EHS and reducing morbidity and mortality (Curran et al., 2011; Morris et al., 2000; Rossnagel et al., 2004; Schroeder et al., 2000; Seo et al., 2014; Fleet et al., 2017). While there is much known about the relationship between hyperacute and acute stroke care and patient outcomes, an important gap remains when it comes to understanding stroke awareness and the use of EHS in communities across Canada, particularly in rural regions. This is a critical gap considering that over 20% of Canada’s population lives in rural and remote areas (Fleet et al., 2013). Specifically, understanding stroke awareness and EHS EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 3 decision-making among high-risk populations, including those residing in Canada’s small urban, northern, rural, and remote communities, can provide crucial and meaningful insights and may, in turn, improve the morbidity and mortality of these high-risk and typically underserved populations. To address this issue, this research uses a multi-method, multi-phase design to better understand the transport practices of stroke survivors in British Columbia (BC). Guided by an integrated knowledge translation (IKT) approach, this collaborative and practice-driven research, seeks to answer research questions identified through active dialogue and discussion between researchers, practitioners, decision-makers, community members, and those with lived experience of stroke and stroke survivorship (Banner et al., 2017). The goal of employing this somewhat unconventional approach to doctoral research and training is an attempt to help bridge gaps in practice and develop an understanding of complex healthcare issues (Graham et al., 2016; Kothari et al., 2017). Using an IKT lens to inform research has been associated with greater uptake of knowledge and findings to promote evidenceinformed practice and policy at the health system level (Graham et al., 2006). The overarching goal of this work is to explore the use of EHS for stroke in BC. First, administrative data from the Discharge Abstracts Database (DAD) is used to explore the use of EHS across BC’s five health regions. Next, administrative data from the Canadian Institutes for Health Information (CIHI) Stroke Special Project 340 is used to determine the impact of EHS use, and patient sex, on emergency in-hospital care in the Northern Health region of BC. Finally, semi-structured qualitative interviews are used to explore the perspectives of patient and caregiver participants to better understand barriers and facilitators to initiating the use of EHS for stroke in small urban, rural, and remote regions across EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 4 northern BC. Developing a more comprehensive understanding of the patterns for EHS use, as well as the community-level perspectives and barriers related to accessing EHS, is essential. Responding to this knowledge gap by highlighting differences in EHS use and identifying factors that inform patient decision-making can help foster the development and refinement of healthcare services that are responsive and targeted to patient needs, improve stroke-related health outcomes, and reduce overall costs to the healthcare system. To contextualize this work, the epidemiology of stroke in Canada is presented, followed by a brief overview of important historical developments that have impacted our understanding of stroke. A succinct discussion of stroke pathophysiology, including risk factors, clinical presentation, diagnosis, and management is then provided. This is followed by an overview of stroke management in emergency departments (ED), including a discussion on inequities and disparities for stroke care in rural settings. Background and Epidemiology of Stroke in Canada Stroke is a leading cause of death and disability in Canada (Heart & Stroke Foundation of Canada, 2017). Each year, there are an estimated 62,000 strokes across Canada, or roughly one every ten minutes (Heart & Stroke Foundation of Canada, 2019). It is estimated that 30% of Canadians are living with chronic disease while a further 90% of the adult Canadian population has at least one risk factor for the development of cardiovascular or cerebrovascular disease (Public Health Agency of Canada, 2017). Stroke patients have high levels of health service utilization. For example, this subset of the population spends more than 639,000 days in acute care in Canadian hospitals and accounts for 4.5 million days in residential care facilities (Canadian Stroke Network, 2011). It is estimated that strokerelated expenditures cost the Canadian economy more than $3.6 billion annually in lost productivity, healthcare services, and sick days (Public Health Agency of Canada, 2009). EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 5 In addition to enormous fiscal costs, stroke also creates a considerable burden for survivors and their caregivers who must live with the lasting effects, including permanent disability. In BC, there are an estimated 6,500 individuals admitted to hospital with stroke or transient ischemic attack each year (Provincial Health Services Authority, 2016). Further, an estimated 56,000 stroke survivors in BC are currently living with a permanent disability, with a projected increase between 88.8% and 112.5% by 2038 (Canadian Stroke, 2015). Pathophysiology and Risk The overall pathophysiology of stroke is inherently complex and multi-faceted. It encompasses a series of processes, including endothelial dysfunction, vascular alterations, inflammation, oxidative stress, ionic imbalances, apoptosis, angiogenesis, and neuroprotection, with the ultimate result of neural cell death and irreversible effects on neural function (George & Steinberg, 2015; Mir et al., 2015). Understanding these mechanisms is essential to salvaging brain tissue and limiting further injury. At the micro-level, complex biochemical processes are at play before, during, and post-stroke and are involved in the regulation of blood viscosity, coagulability, and neuroregeneration (Caplan, 2016). However, given the scope and focus of this dissertation, a detailed discussion of these molecular mechanisms is not presented. Instead, a brief overview of key pathophysiological processes will be described as they relate to the etiology of transient ischemic attack and stroke. Transient Ischemic Attack While not a focus of this research, delineating between transient ischemic attack and stroke is important given the overlap in pathophysiology, presentation, and symptoms, along with the added risk transient ischemic attacks pose for a stroke event. The term ‘transient ischemic attack’ emerged in the 1950s after physicians identified temporary vascular episodes of brain dysfunction that didn’t fit the diagnostic criteria for stroke (Sacco et al., EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 6 2013). A transient ischemic attack, commonly referred to as a ‘mini-stroke’, is predominantly caused by small cerebral emboli that spontaneously lyse before ischemic tissue is permanently damaged (Standgaard & Paulson, 1990). In a smaller subset of cases, transient ischemic attacks can result from small intracerebral hematomas (small blood clots in the brain) that are rapidly dissolved before causing any permanent tissue damage (Caplan, 2016). From a clinical perspective, the differentiation between stroke and transient ischemic attack is primarily based on time of symptom duration. However, there has been a noticeable shift from an emphasis on time to a focus on the impact on tissue necrosis (Caplan, 2016). For example, the American Heart Association (AHA) has recommended a tissue-based definition of transient ischemic attack. They propose transient ischemic attack be defined as “a transient episode of neurological dysfunction caused by a focal brain, spinal cord, or retinal ischemia, without acute infarction” (Easton et al., 2009). While this definition eliminates the time limit restriction associated with previous definitions, it is highly dependent on timely access to diagnostic tests, including computed tomography (CT) and magnetic resonance imaging (MRI). This is problematic, even in developed countries like Canada and the United States, as equitable access to neuroimaging remains a key barrier to providing evidence-based stroke care (Fleet et al., 2018; Leira et al., 2008; Schultis et al., 2010; Watchorn et al., 2021). For the present time, a transient ischemic attack remains a clinical diagnosis largely based on the accurate history and interpretation skills of physicians (Schrock et al., 2012). Transient ischemic attacks are sometimes not perceived to be as serious as they perhaps should be. While transient ischemic attacks might be considered benign, primarily because they do not result in permanent brain damage, they can be an important warning sign EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 7 of the future risk of a major stroke and require careful and timely medical attention (Caplan, 2016). For example, 15-30% of ischemic strokes are preceded by transient ischemic attack symptoms, often within the same 24-hour period (Rothwell et al., 2005). Due to the temporary nature of a transient ischemic attack, clinical symptoms can last anywhere from minutes to upwards of 24 hours (Strandgaard & Paulson, 1990). Not considered a formal stroke, transient ischemic attacks are part of the sequelae of stroke-related pathology. As such, symptoms share commonalities with those of acute stroke and may include changes to motor function, sensory, speech, and language difficulties, visual disturbances, and cerebellar problems (Dawson et al., 2016; Lindsay et al., 2008; Lioutas et al., 2013; Merino et al., 2013). Stroke The term ‘stroke’ was first used in 1689 by William Cole in his ‘A Physico-Medical Essay Concerning the Late Frequencies of Apoplexies’ (Fields & Lemak, 1989). Before this, stroke was referred to as apoplexy (derived from the Greek term apoplexy meaning ‘struck with violence’) (Caplan 2016; Sacco et al., 2013). Classically, stroke has been defined as a neurological deficit attributed to an acute focal injury of the central nervous system due to vascular causes, including cerebral infarction (Sacco et al., 2013). Although not commonly used in medical literature, stroke is sometimes referred to by other terms, including ‘cerebrovascular accident’ or ‘brain attack’. A brief overview of some of the key historical developments that have shaped our modern-day understanding of stroke are summarized in Figure 1. •Hippocrates: First to write about medical aspects of stroke with a heavy focus on prognosis and outcome. •Galen: Described the anatomy of the brain from animal dissections and his work was heavily influential during Middle and Dark Ages. •Vesalius: Relied on own observations of human dissections and provided the earliest contributions of illustrations relating to human anatomy. •Giovanni Battista Morgagni: Examined brains of patients dying from apoplexy and was the first to show bleeding in brain cause of apoplexy. •Thomas Willis: First to recognize transient ischemic attack, explored phenomenology of embolism and described collateral circulation of the head and neck. •Johann Jakob Wepfer: Focused on etiology and pathology and is the father of clinicopathological method. •John Cheyne: Wrote influential treatise on apoplexy and sought to distinguish between phenomenology of coma and apoplexy. •John Abercombie: Contributed detailed classification of apoplexy based on clinical signs and symptoms. •Virchow: Provided important pathological and experiemental information about vascular disease and detailed relationship between thrombi and infarction. 400 BC 131-201 AD 15141564 16201695 16211675 16821771 17761836 1828 18211902 A Timeline of Some of the Major Developments in the History of Stroke Before the 20th Century (informed in part by Caplan, 2016) Figure 1 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 8 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 9 The World Health Organization formally defines stroke as “rapidly developed clinical signs of focal or global disturbance of cerebral functions lasting more than 24 hours or leading to death with no other apparent cause other than vascular origin” (p. 1, World Health Organization, 2017). This widely used definition has been around since the 1970s. In 2013, Sacco et al. published a discussion paper in which the authors argued the need for an updated definition of stroke given the recent advancements in basic sciences, neuropathology, and neuroimaging that have led to an improved understanding of ischemia, infarction, and hemorrhage. Fundamentally, stroke is a sudden loss of brain function due to a disturbance in blood supply to the central nervous system (Arboix, 2006). Normal cerebral blood flow is defined as 50 to 60ml/100g/min (Bandera et al., 2006). A reduction of cerebral blood flow below 20ml/100g/min can lead to the silencing of electrical activity, while a cerebral blood flow of <10ml/100g/min can occur in ischemic stroke, results in irreversible neuronal injury (Bandera et al., 2006). This lack of adequate blood circulation to the brain deprives neurons of essential nutrients, including glucose and oxygen. Since neurons are impulse transmitters that require a constant supply of energy, deprivation of this energy through a reduction or blockage of blood flow results in serious impairment of normal neurological processes (Mir et al., 2014). Stroke can be broadly classified into two categories, ischemic and hemorrhagic. An overview is provided in Figure 2. Considered diametric opposites, ischemic strokes are a more common occurrence, representing 80% of the overall stroke burden (Shiber et al., 2010). Cerebrovascular disease • Atherothrombotic • Small-artery lipophyalinosis • Other mechanisms Cardiogenic embolism • Atrial fibrillation • Ischemic heart disease • Valvular heart disease • Prosthetic cardiac valves • Infective endocarditis • Other mechanisms Other (less common causes) • Dissections • Hypercoagulable states • Vasculitis • Systemic hypotension Cerebroavascular disease 80% Cardiogenic embolism 15% Ischemic 80% Intracerebral • Hypertension Subarachnoid • Aneurysm • Arteriovenous malformation • Trauma Subarachnoid 85-90% Hemorrhagic 20% Intracerebral 10-15% Acute Stroke Other, less common causes 5% Classification and Causes of Ischemic versus Hemorrhagic Stroke Figure 2 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 10 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 11 Ischemic Stroke. Ischemic stroke occurs due to insufficient blood supply and inadequate levels of oxygen and nutrients reaching the brain (Stangaard & Paulson, 1990). This form of stroke can lead to temporary or permanent injury of brain tissue. Ischemic strokes are typically caused by a blood clot or emboli, which restricts normal blood flow (Caplan, 2016). These clots can have diverse etiologies, including uncontrolled hypertension or dyslipidemia (Bandera et al., 2006). Ischemia can be subdivided into three main mechanisms, including thrombosis, embolism, and decreased perfusion to an area of the brain (Caplan, 2016). Local occlusion, or thrombosis, occurs within one or more focal cerebral blood vessels. This obstruction can be caused by a thrombus, air, or an atherosclerotic plaque superimposed by a thrombotic occlusion (Caplan, 2016). Embolism refers to an obstruction in which material formed elsewhere within the vascular system lodges into an artery and blocks the flow of blood (Caplan, 2016). This blockage can be temporary or may last for hours or days before any distal movement (Caplan, 2016). Finally, a decrease in perfusion occurs due to low systemic perfusion pressure. Common causes of low perfusion can include cardiac pump failure due to arrhythmia or myocardial infarction and systemic hypotension due to blood loss or hypovolemia (Caplan, 2016). Ischemia results in damage of brain tissue by activating the ischemic cascade (George & Steinberg, 2015). The activation of the cascade leads to local depletion of oxygen and glucose, reducing the production of high-energy compounds, such as adenosine triphosphate (Caplan, 2016) which negatively affects key energy-dependent processes essential for the survival of tissue cells. This, in turn, facilitates the triggering of a cascade of events, which ultimately result in cellular damage and cell death (i.e., apoptosis) (Caplan, 2016; George & EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 12 Steinberg, 2015). The extent of cell death or damage is typically dependent on the duration and severity of blood flow interruption, as well as the location of ischemia. While the discussion of stroke pathophysiology typically involves a focus on the arterial interruption of blood flow, veins have also been known to be the main site of ischemia in a smaller subset of patients (Caplan, 2016). Hemorrhagic Stroke. Hemorrhagic strokes are less common than ischemic, representing about 20% of the stroke burden overall (Shiber et al., 2010). Hemorrhagic stroke occurs when there is an over perfusion of blood within the closed cranial cavity. For example, they may occur when a blood vessel ruptures, causing bleeding around the brain (George & Steinberg, 2015). From a pathophysiological perspective, hemorrhagic strokes are a result of a) hypoxia due to a disruption in the vascular supply; b) irritant response of blood release on brain parenchyma and vasculature; and/or c) raised intracranial pressure due to continued bleeding which may further restrict cerebral blood flow (Caplan, 2016; George & Steinberg, 2015). Hemorrhagic strokes can be subdivided into two main subtypes, including subarachnoid and intracerebral (Caplan, 2016). Each of these subtypes has different mechanisms posing unique clinical problems but both can have catastrophic outcomes. A subarachnoid hemorrhage occurs when blood leaks out of the vascular bed onto the brain surface and disseminates into the spinal fluid pathways and spaces surrounding the brain (Caplan, 2016). Bleeding generally occurs as a result of aneurysm ruptures, vascular malformations, diatheses, or trauma (George & Steinberg, 2015). These pose considerable mortality risks, representing an average 50% mortality rate (Xian et al., 2012). An intracerebral hemorrhage generally occurs in smaller arteries or arterioles directly into the EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 13 brain substance (Caplan, 2016). Common causes of intracerebral hemorrhage include trauma, hypertension, the use of illicit substances, including cocaine, vascular malformations, bleeding disorders, and amyloid angiopathy (George & Steinberg, 2015). Clinical Presentation The onset of stroke is typically sudden and is accompanied by the appearance of focal neurological deficits associated with specific cerebrovascular territory (Winkler et al., 2009). For example, there may be weakness associated with a sudden loss of strength or paresthesia in the face, arm, or leg; speech difficulties, including sudden confusion or trouble speaking, changes in vision, a severe or unusual headache, and dizziness accompanied by a loss of balance (Caplan, 2016). While little epidemiological data (An et al., 2017; Rennert et al., 2019) regarding the clinical characteristics of stroke exist, Rathore et al. (2002) undertook a population-based cohort study to characterize the clinical presentation of incident strokes. In this study, the frequency of stroke symptoms was noted as follows: headache in 27.4% (95% CI 23.4-31.4), gait disturbance in 10.8% (95% CI 7.9-13.6), convulsions in 4.4% (95% CI 2.6-6.3), and vertigo in 2.1% (95% CI 0.8-3.4). Speech deficits occurred in 24.0% (95% CI 20.2-27.9), vision loss in 14.6% (95% CI 11.4-17.7), and double vision in 5.5% (95% CI 3.47.5) of cases. Weakness or partial loss of voluntary movement was found in 81.6% of cases (95% CI 78.1-85.1), while fewer cases experienced sensory challenges (44.5%; 95% CI 40.049.0). A higher proportion of headaches (55.6% versus 22.4%; p=0.001) and convulsions (11.1% versus 3.2%; p=0.003) were found in those with hemorrhagic stroke 26.1% versus ischemic stroke 12.5% (p=0.013), and whereas speech and sensory deficits were more common in cases of ischemic stroke at 49.0% versus hemorrhagic stroke 19.4% (p=0.001). Notably, several other conditions present similar to a stroke. These can include hypoglycemia, hyperglycemia, epilepsy, multiple sclerosis, migraines, and intracranial EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 14 tumors or infections (e.g., meningitis, encephalitis, and abscesses) (Winkler et al., 2009). Differential diagnoses for transient ischemic attack can include seizures, migraines, and peripheral vestibulopathy, while differential diagnoses for suspected stroke often include seizures, tumors, abscess, Bell’s palsy, hematomas, upper cord lesions, focal encephalitis, and severe or sudden collapse and cardiac arrest (Guidelines and Protocol Advisory Committee, 2015; Winkler et al., 2009). However, for those with resolving symptoms within 24 hours of symptom onset, a transient ischemic attack may be diagnosed (Caplan, 2016). A brief overview of both non-modifiable and modifiable risk factors for stroke follows. Risk Factors and Risk Reduction Advances in clinical epidemiology came with the study of large data banks and stroke registries. With the advent of computers in the 1970s, it became possible to store and analyze large sets of data. In the early 1970s, the Harvard Stroke Registry became the first computerbased registry of prospectively studied stroke patients (Mohr et al., 1978). On an international scale, other notable registries were developed, including those in Framingham, Massachusetts (Wolf et al., 1987), Lehigh Valley in Pennsylvania (Alter et al., 1985), and Oxfordshire in Great Britain (Oxfordshire Community Stroke Project, 1983). It was these early registries that aided our understanding of the clinical, pathological, and epidemiological features of stroke, as well as provide a more comprehensive and population-level understanding of stroke-related risk factors. There are several well-established risk factors for stroke, both non-modifiable and modifiable. While there are pathogenic differences between the different forms of stroke, certain predisposing factors are common to most types of stroke. A large worldwide population-based study identified ten risk factors that collectively account for up to 88% of stroke risk across all ages (O’Donnell et al., 2010), lending support to the notion that the EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 15 majority of strokes are preventable. The identification and understanding of these risk factors form the foundation for the prevention, management, and treatment of acute stroke (Arboix, 2015). Non-modifiable Risk Factors Non-modifiable risk factors are risk factors you cannot change. They include age, sex, ethnicity, and family history, or prior personal history of transient ischemic attack or stroke. Each of these is described briefly in relation to stroke. Age. Age is the strongest independent and non-modifiable risk factor for stroke (Wolf, 1991). With each year of age increase, the base rate for risk of stroke, both fatal and non-fatal, increases by 9.0% in men and 10.0% in women (Asplund et al., 2009). In general, the risk of stroke doubles every decade after 55 years of age, while from a sex-based lens, females over the age of 55 and males over 45 are at an increased risk (Heart & Stroke Foundation of Canada, 2017; Sacco et al., 1997). Sex. Sex-specific differences in stroke risk are an emerging area of scientific interest. In addition to sex-specific modifiable risk factors, defined as risk factors that are unique to either the male or female sex, sex is also considered an independent non-modifiable risk factor for stroke. There appears to be a higher incidence of age-specific stroke rates among females, thought to in part be due to vascular and hormonal changes associated with menopause, including endothelial dysfunction and an increase in renin-angiotensin activation (Wassertheil-Smoller, 2010). However, more stroke events occur in females in part due to the higher life expectancy observed in females, as well as a higher incidence of stroke in females of older age than males (Goff et al., 2013; Reeves, 2008). EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 16 Research has demonstrated that stroke has a greater impact on females compared to males. Females have more stroke events, a higher likelihood of post-stroke complications (Reeves, 2008; Wassertheil-Smoller, 2010), and are more likely to die as a result of stroke (Heart & Stroke Foundation of Canada, 2017). For example, 59% of all stroke events occur in females, females are 60% less likely to regain independence after stroke and experience worse quality of life, and one-third more females die from stroke than males in Canada (Heart & Stroke Foundation of Canada, 2018). These important differences in outcomes are in part thought to be due to female-specific risk factors, such as the use of oral contraceptives, pregnancy, and menopause. However, in addition to these sex-specific risk factors, important inequities have been observed in stroke prevention, diagnosis, and management that increase a female’s risk of stroke-related morbidity and mortality as compared to their male counterparts (Caplan, 2016; Bushnell et al., 2018). Ethnicity. Ethnicity has emerged as an important risk factor in stroke. Of note, individuals of Indigenous, African, Hispanic, and South Asian descent have a greater risk of stroke as compared to those of Caucasian descent (Bravata et al., 2005; Gebel & Broderick, 1999; Heart & Stroke Foundation of Canada, 2017; Wasay et al., 2014). This in part may be due to a higher prevalence of stroke-related risk factors, including diabetes mellitus and hypertensive disorders observed in these populations. For example, individuals of African, South Asian, and Asian descent tend to have both a higher risk and higher incidence of hypertension development compared to those of Caucasian descent (Heart & Stroke Foundation of Canada, 2017). In these groups, hypertension typically begins at a younger age, is usually more severe, and is associated with a higher rate of complications (Arboix, 2015), including EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 17 myocardial infarction, and systemic renal failure (Ettehad et al., 2016). Factors other than lifestyle have been implicated in the increased risk for certain ethnic groups. Determining the exact contributions of each of these factors to stroke risk is challenging given the heterogeneity of stroke, methodological differences in studies, population variability, and the complexity of interactions between conventional stroke risk factors. However, certain genetic factors, such as those that contribute to vascular malformations, may play a role in higher stroke incidence among ethnic populations. For example, emerging data from genetics studies, including from the Consortium of Minority Population Genome-Wide Association Studies of Stroke (COMPASS) has demonstrated the association between 16 loci near the HNF1A gene with stroke for those of African descent (Keene et al., 2020). However, racial and ethnic differences observed in stroke could also be attributed to social determinants of health, as well as challenges with equitable access to healthcare (Bohme et al., 2017; Reading & Wien, 2009; Stephens et al., 2006). Family History and/or Prior Personal History. Having a first-degree relative, such as a sibling, grandparent, or parent with stroke before the age of 65 also appears to be associated with an increased risk of stroke, even after adjusting for other vascular risk factors (Sacco et al., 1997). This increased risk may be attributable to several factors, including an inherited predisposition for stroke risk factors, familial-related lifestyle, cultural, and environmental factors, a genetic and environmental interaction, or a genetic transmission of susceptibility to stroke (Dichgans, 2007). Finally, having a personal history of stroke or transient ischemic attack is predictive of increased stroke risk. For example, almost a third of prior stroke or transient ischemic attack survivors will have a second stroke within five years EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 18 (Caplan, 2016). Likewise, ischemic stroke survivors have a 15 to 40% chance of a recurrent stroke within five years of their first stroke (Burn et al., 1994; Hardie et al., 2005). Modifiable Risk Factors Many major modifiable risk factors for stroke share considerable overlap with those implicated in the etiology of coronary heart disease (Arboix, 2015). These include hypertension, diabetes mellitus, obesity, atrial fibrillation, obstructive sleep apnea, smoking, dyslipidemia, substance use disorders, obesity, the use of oral contraceptives, and migraines (Caplan, 2016). Each of these is described briefly in relation to stroke. Hypertension. It is estimated that approximately 20% of the Canadian population suffers from hypertensive disorders (Padwal et al., 2015). Hypertension, classified by a blood pressure of >140/90 mm Hg, has been identified as the single most important risk factor for both ischemic and hemorrhagic stroke (O’Donnell et al., 2010; Leung et al., 2016). A large case-control study of 22 countries, INTERSTROKE, estimated that hypertension is reported in 64% of patients with stroke (O’Donnell et al., 2010). A precursor to certain cardiac conditions, including myocardial infarction, and atrial fibrillation (Arboix, 2015), hypertension can also further increase the risk of aneurysms as well as facilitate the development of cerebral embolisms (Caplan, 2016). Hypertension multiplies the risk for stroke, in some cases as much as four-fold (Arboix, 2015). For example, the risk for cerebral hemorrhage for hypertensive patients is 3.9 times higher than for those without hypertension (Arboix, 2015). Diabetes Mellitus. Diabetes is a major risk factor for stroke, second only to hypertension, and it is estimated 60.0% of hypertensive patients will be afflicted by diabetes in their lifetime (Arboix, 2015; Kissela et al., 2005). Currently, an estimated 11 million EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 19 Canadians live with diabetes or prediabetes (Diabetes Canada, 2017), making this an important population at risk for stroke. It has been estimated that one-third of all patients with stroke also have diabetes (Lau et al., 2018). Insulin or non-insulin-dependent diabetes results in pathologic vascular changes that can predispose individuals to stroke (Bloomgarden, 2007; Chen et al., 2016; Krentz et al., 2007). Having diabetes increases one’s risk of stroke by 1.5 times (Caplan et al., 2016; Kannel et al., 1979) and the impact of this increased risk is higher in females than in males (Arboix et al., 2006). A meta-analysis by Lau et al. (2018) found that the prevalence of diabetes among those with stroke is 28.0% and higher in ischemic (33.0%; 95% CI 28.038.0) stroke than hemorrhagic (26.0%; 95% CI 19.0-33.0). Moreover, most studies found diabetes was associated with poorer outcomes post-stroke, including higher mortality, readmission, recurrence, and poorer neurological and functional outcomes. Obesity. Obesity has also been identified as a notable risk factor for stroke. In 2015, an estimated 61.3% of Canadians were either overweight or obese (Gotay et al., 2013; Statistics Canada, 2015). Obesity is defined by an increase of 25% above the theoretical body weight according to an individual’s age and sex (Arboix, 2015) and occurs when there is an energy imbalance between caloric intake and caloric expenditure (through physical activity and/or metabolic processes) (Caplan, 2016). The resulting increase in adipose tissue is associated with a higher risk for the development of stroke-related risk factors, including insulin resistance, diabetes, dyslipidemia, hypertension, vascular disorders, and subsequently stroke (Arboix, 2015; Bodenant et al., 2011). While the prevalence of obesity among those with stroke remains to be thoroughly studied, it has been estimated that 18% to 44% of those with stroke are also obese, as defined by a body mass index of >30kg/m2 (Kernan et al., EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 20 2013). Other studies, including INTERSTROKE, have suggested that compared to body mass index, greater waist-to-hip ratios are stronger predictors of stroke risk (O’Donnell et al., 2010). Cardiovascular Disease. It is estimated that over 2.4 million Canadian adults over the age of 20 are currently living with cardiovascular disease, while nine out of ten Canadians over 20 years of age have at least one risk factor for cardiovascular disease (Heart & Stroke Foundation of Canada, 2017). Cardiovascular diseases are an important risk factor for stroke. The co-occurrence of cardiovascular and cerebrovascular diseases and risk factors has been well documented (Botly et al., 2020); they are diagnosed in one-third of stroke survivors (Arnold et al., 2007; Shah et al., 2006). A combination of vascular changes, inflammation, and buildup of atherosclerotic plaques are thought to contribute to this elevated risk of stroke (Caplan, 2016). One example of a cardiovascular disease that substantially elevates stroke risk is atrial fibrillation (AF). It is a serious cardiac arrhythmia characterized by erratic and uncoordinated atrial activity (Iwasaki et al., 2011). Atrial fibrillation is the most common sustainable arrhythmia encountered in acute care (Banner, 2008). It increases the likelihood of thromboembolic events due to changes in cerebral perfusion and is associated with a 500 to 600% increased risk of stroke (Wolf et al., 1991; Andrew et al., 2012). It accounts for 15% of all strokes and is linked with worse stroke outcomes (Andrew et al., 2012). Atrial fibrillation can occur alone or secondary to other chronic conditions, including heart failure, obesity, diabetes, and kidney disease (Iwasaki et al., 2011). Although AF predominantly occurs in those over the age of 65, it can affect both the young and old (Banner, 2008; Wolf et al., 1991). It is estimated that approximately 350,000 Canadians are affected by this most EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 21 common form of arrhythmia (Heart & Stroke Foundation of Canada, 2017). Over the last decade, AF rates have more than doubled and the incidence is projected to further increase dramatically over the coming years (Zoni-Berisso et al., 2014). As a result, AF is emerging as an increasingly important risk factor for stroke. Obstructive Sleep Apnea. Obstructive sleep apnea is a form of disordered breathing, with no underlying cause, in which the upper airway repeatedly closes during sleep (Caplan, 2016). It is often associated with obesity and in 2009, an estimated 858,900 Canadian adults reported being diagnosed with sleep apnea (Statistics Canada, 2009). There is an established link between obstructive sleep apnea and those who go on to have a stroke, it is associated with 1.6 to 2.7 times greater risk (Arboix, 2015; Das et al., 2012). A higher incidence of obstructive sleep apnea post-stroke has also been observed (Das & Khan, 2012; Davis et al., 2013). In studies of obstructive sleep apnea in those with stroke, there has been a wide variability in the reported frequencies of obstructive sleep apnea ranging from about 30% to 80% (Das et al., 2007; Hui et al., 2002; Johnson & Johnson, 2010), whereas the prevalence of obstructive sleep apnea in the general population is estimated to be three to seven percent (Duran et al., 2001; Owen et al., 2015). Cigarette Smoking. Cigarette smoking is also an independent risk factor for atherothrombotic stroke in both males and females (Burns et al., 2006). In 2018, 4.9 million Canadians over the age of 12 reported smoking cigarettes either daily or on occasion (Statistics Canada, 2018). Smoking increases one’s risk for stroke two-fold and has been linked to sudden death (Anderson et al., 2004). An atherothrombotic stroke occurs when a blood clot forms on an atherosclerotic plaque within a blood vessel in the brain and impairs blood flow to that part of the brain. In the Framingham Study, smoking was found to be a EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 22 significant risk factor for atherothrombotic brain infarction, a cause of ischemic stroke, among males younger than 65 years (Liao et al., 1997; Wolf et al., 1991). From a pathophysiological standpoint, smoking can facilitate thrombus formation, increase atherosclerotic plaque build-up, blood viscosity, fibrinogen, and platelet aggregation, and decrease high-density lipoprotein cholesterol (Caplan, 2016). These factors can result in direct damage to endothelial tissue and increase blood pressure (Burns et al., 2006; Lavie & Lavie, 2008; Underner et al., 2006). The INTERSTROKE study estimated that the proportion of stroke attributable to current smoking is nearly 20% (O’Donnell et al., 2010). However, smoking cessation can considerably reduce one’s risk of adverse events within only two years, and at five years, a former smoker’s risk is equivalent to that of a lifetime non-smoker (Shah & Cole, 2010). Substance Use Disorders. People with substance use disorders, including those who use heroin, cocaine, and amphetamines, are at an increased risk for stroke (Arboix, 2015). The use of these substances is known to increase platelet aggregation and blood viscosity and cause changes in blood pressure as well as hemostatic, hematologic, and vascular abnormalities (Allen & Bayraktutan, 2008; Goldstein et al., 2006; Hankey, 2005). Substance use disorders are an increasingly important driver of stroke among younger adults. For example, the use of substances such as crack and cocaine can cause a stroke through vasoconstriction (Caplan, 2016). Additionally, cocaine use can cause abnormal heart rhythm and increased heart rate, which can further facilitate clot formation (Tredwell & Robinson, 2007; Westover et al., 2007). Alcohol, or ethanol, is a neurotoxin. Chronic alcohol use has been implicated in various neurodegenerative processes (Peters et al., 2008), including elevating stroke risk due EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 23 to impacts on liver function and clot formation (Caplan, 2016). Alcohol is the most common substance used by Canadians and in 2015, 4.3 million Canadians consumed enough alcohol to be at risk for negative long-term health problems, including liver damage (Statistics Canada, 2017). Chronic and heavy alcohol consumption, defined by >60 g/d, is associated with an increase in relative risk (RR) of 1.69 for cerebral ischemia and a relative risk of 2.18 for cerebral hemorrhage (Arboix, 2015; Hanefeld et al., 2007; O’Donnell et al., 2010). Contrastingly, light to moderate alcohol consumption, defined by 20-30 g/d or 1-2 drinks a day, is associated with a lower risk of white matter disease, stroke, and clinically silent infarcts (Caradang et al., 2006; Hanefeld et al., 2007; O’Donnell et al., 2010). Migraine. A migraine is a type of headache caused by abnormal brain activity (Caplan, 2016). This activity can be triggered by many different stimuli and while the exact mechanisms behind migraine are poorly understood, it is hypothesized that this occurs in part due to platelet hyperaggregability and reduction in cerebral blood flow (Caplan, 2016; Etminan et al., 2005; Roquer et al., 2003). At the cellular level, there also appears to be an increase in platelet activation and platelet-leukocyte aggregation, which facilitates emboli formation and subsequently increases the risk of ischemia (Arboix, 2015; Ayala et al., 2002; The Publications Committee for the Trial of ORG 10172 in Acute Stroke Treatment (TOAST) Investigators, 1998). While the link between migraine headaches and stroke is not yet fully understood, there appears to be an association between migraine and stroke risk. A meta-analysis by Spector et al. (2010) found that migraine was associated with a two-fold increase of ischemic stroke. From a sex-based perspective, there is a stronger risk of stroke for females who experience migraine headaches with aura than males (Caplan, 2016). Further, there appears to be a compounded risk for females on oral contraceptives or for EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 24 those who smoke and who experience migraine headaches (Heart & Stroke Foundation of Canada, 2017). Sex-specific Modifiable Risk Factors. There is growing recognition for the need to better understand sex-specific differences in diseases, including stroke. Sex refers to a set of biological attributes in humans and animals (Bushnell et al., 2006). It is primarily associated with physical and physiological features, including chromosomes, gene expression, hormone levels and function, and reproductive and sexual anatomy (Canadian Institutes of Health Research, 2017). While generally categorized as male or female, there can be variations in the biological attributes that comprise sex and the expression of those attributes (Canadian Institutes of Health Research, 2017). Gender is defined as the socially constructed roles, behaviors, expressions, and identities of girls, women, boys, men, and gender-diverse individuals (Canadian Institutes of Health Research, 2015). Gender influences how people perceive themselves and each other, how they act and interact, and the distribution of power and resources in society. Gender is traditionally conceptualized as binary (girl/woman or boy/man) yet there is considerable variation in how individuals and groups understand, experience, and express gender (Canadian Institutes of Health Research, 2017). Thus, more diverse models of gender are preferred. Current knowledge is commonly focused on sexrelated differences there is less is known about gender due to a paucity of research in the area. Sex differences have become key outcomes of interest in health research and are becoming increasingly documented in the stroke literature (Appelros et al., 2009; Ayromlou et al., 2013; Bushnell et al., 2018; Johnson et al., 2009; Reeves et al., 2009; Turtzo & McCullough, 2008). Notable differences have been observed in the epidemiology, EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 25 pathophysiology, treatment, and outcomes, including mortality for stroke between the sexes (Caplan, 2016). There are some noteworthy and unique modifiable risk factors across the lifespan that put females at an increased risk for developing stroke, including the use of oral contraceptives, pregnancy, migraine headaches, and menopause (Caplan, 2016; Heart & Stroke Foundation of Canada, 2017). Each of these is outlined briefly. Oral Contraceptives. The risk of stroke in females who use oral contraceptives has been estimated to be 30% greater than that of non-users in part due to an increase in clotting and blood pressure associated with the use of contraceptives (Bath et al., 2005; Magnliano et al., 2006; Sare et al., 2006). Research has estimated that 1 out of 100,000 females will experience a stroke as a result of oral contraceptive use (Swartz et al., 2017). The exact mechanisms behind this increased risk remain unclear, however, this elevated risk is more frequently seen in females over the age of 35, females who smoke, and females who have other cardiovascular risk factors, including hypertension, migraine headaches, diabetes, and a history of thromboembolism (Etminan et al., 2005; Roquer et al., 2003). In contrast, the stroke risk in females who use low-dose oral contraceptives (low levels of estrogen) without additional risk factors appears to be minimal (Etminan et al., 2005). Research scientists have also linked the use of certain oral contraceptives to an increased risk for hypertension and thrombosis development (Dragonman et al., 2018; Caplan, 2016; Liu et al., 2017). This risk is further elevated by three to four times in females who use oral contraception and are smokers, have hypertension and/or hyperlipidemia, or are over the age of 40 (Caplan, 2016). In response to this, there is increasing evidence that combined oral contraceptives, consisting of progesterone and estrogen, can increase the risk for ischemic stroke (Carwile et al., 2009; Heart & Stroke Foundation of Canada, 2017). EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 26 Pregnancy. Pregnancy is a major stress test for the human body and for many young females, it is their first major exposure to a stroke risk factor. A systematic review commissioned by the Heart and Stroke found that stroke is three times more likely to occur in pregnant versus non-pregnant females of the same age (Heart & Stroke Foundation of Canada, 2017). Other research has demonstrated that 30 out of 100,000 females will experience a stroke during their pregnancy (Swartz et al., 2017; Wilson et al., 2003) compared to an incidence of 10.7 per 100,000 among non-pregnant females (Swartz et al., 2017). While further research is required to understand why there is an increased risk of stroke in pregnancy, early work has demonstrated that pre-eclampsia and eclampsia are the strongest risk factors for stroke in pregnant females and account for up to half of all strokes that occur in pregnancy (Heart & Stroke Foundation of Canada, 2017). Furthermore, other complications of pregnancy including hyperemesis and changes in fluid and electrolyte balance also increase stroke risk (Swartz et al., 2017; Wilson et al., 2003). Importantly, not only do these pregnancy-related hypertensive disorders put females at increased risk of stroke during pregnancy, but they can also put females at increased risk for stroke and premature death later in life (Caplan, 2016; Wilson et al., 2003). Menopause. There is also an increased risk for stroke among females of menopausal age. This is thought to be attributable to a drop in estrogen levels that occurs during this time, resulting in a related decrease in the protective effects that estrogen plays against stroke and hypertension development (Austin et al., 2013). Cohort studies following women through menopause have shown an increase in abdominal obesity, triglycerides, fasting glucose, hypertension, and other measures of insulin resistance (Caplan 2016; Lisabeth et al., 2012). Hormone replacement therapy is widely used as a treatment for the symptoms associated EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 27 with menopause (Lisabeth et al., 2012). The use of hormone replacement therapy has also been associated with a 30% increase in the risk of stroke (Lisabeth et al., 2012; Heart & Stroke Foundation of Canada, 2017). Some research has indicated that after three years of hormone replacement use, stroke risk increases from six to 12 per 1,000 treated females; after seven years the risk increases to 25 to 40 per 1,000 females (Canonico et al., 2008). Other less well-documented vascular risk factors for stroke include a sedentary lifestyle, insufficient vegetable and fruit consumption, and psychosocial stress (Arboix, 2015). Several inflammatory biomarkers, including monocyte and leukocyte counts, recent periodontal infections, and albuminuria have also been implicated for their role in increasing stroke risk (Arboix, 2015; Caplan 2016). However, further research into the causal role of each of these factors is required to reach a consensus as to their respective contributions towards the risk of stroke. Stroke Risk Reduction As highlighted, there are many modifiable and non-modifiable risk factors for stroke. While it is beyond the scope of this dissertation to provide a comprehensive review of risk reduction measures, it is a vital aspect of stroke prevention therefore a brief overview is warranted. Risk mitigation for stroke prevention is important and typically involves a twotier approach of primary and secondary measures (Caplan, 2016). Primary prevention is an individual-level approach aimed at disease prevention in otherwise healthy individuals. Public education is a cornerstone of primary prevention efforts and may include increasing knowledge around healthy eating, physical activity, and managing pre-existing conditions like hypertension to decrease one’s risk for stroke (Heart & Stroke Foundation of Canada, 2017; Leung et al., 2016). Improving the general health practices of a population can EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 28 undoubtedly decrease the burden of modifiable risk factors and have potentially consequential impacts on disease burden. Smoking cessation, the prevention of obesity, the promotion of physical activity, and healthy eating are all facets of preventative public education strategies (Arboix, 2015). Secondary prevention can be defined as any effort made to reduce the risk for individuals at-risk (Caplan, 2016). It is an evidence-based individual-level clinical lens approach to reduce the risk of recurrent cerebrovascular events in those who have experienced a stroke, transient ischemic attack, or those who have one or more risk factors for stroke. These risk factors typically include lifestyle changes, including diet, reducing sodium intake, exercising, maintaining a healthy weight, smoking cessation, and reducing alcohol consumption (Caplan, 2016; Heart & Stroke Foundation of Canada, 2017). Others include hypertension, dyslipidemia, atrial fibrillation, previous stroke or transient ischemic attack, and carotid stenosis (Caplan, 2016; Heart & Stroke Foundation of Canada, 2017). The etiology of stroke is multifactorial and therapeutic interventions targeting secondary prevention have been shown to reduce the risk of recurrent stroke, as well as the risk of other coronary and peripheral vascular episodes (European Stroke Organization, 2008; Marrugat al., 2007). Evidence-based stroke prevention represents an important health system priority, alongside the need to deliver high-quality responsive care to those presenting with stroke, it is crucial since it is estimated that 25 to 30% of all strokes are recurrent (Caplan, 2016). Clinical Management and Diagnosis Rapidly identifying the underlying stroke mechanism and etiology is essential to establishing a concrete diagnosis and guiding therapy and secondary prevention (Caplan, 2016). Knowing a patient’s medical history, the presence of risk factors and comorbidities, EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 29 and employing the use of imaging modalities can ensure that therapeutic interventions are tailored to the patient’s unique circumstances. The management and diagnosis of stroke represent important aspects of stroke care and are outlined below. Diagnosis and Management Since the 1970s, there has been tremendous growth in the interest, knowledge, and understanding of stroke. As a result, the clinical management of stroke has undergone a considerable transformation and there are several international and national guidelines in place to direct inpatient stroke care. Internationally, these include the American Heart Association (AHA)/American Society of Cardiology (ASC) (Powers et al., 2019) and the European Society of Cardiology (ESC) (Ntaios et al., 2015) guidelines which take into account best practices and their respective regional contexts. On a national level, the Canadian Stroke Best Practice Recommendations (2018) provide up-to-date evidence-based guidelines for the prevention and management of stroke and guidelines to promote the optimal recovery and reintegration of stroke survivors, their families, and informal caregivers (Lin et al., 2020). The diagnostic process and clinical management of stroke is a multi-step process to assess, confirm a diagnosis, and treat stroke. Key steps include pre-hospital stroke services, EHS, physician assessment, diagnostics (including imaging), and therapies (e.g., thrombolytics and EVT). While these guidelines provide very detailed discussions on each phase of assessment and management, this is beyond the scope of this dissertation and a succinct overview is provided to add context, along with a diagram to summarize these key stages in Figure 3. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 30 Figure 3 Transitions in Stroke Care (Model for Transitions of Care adapted from Canadian Best Practices 2018 with permission) EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 31 Prehospital and Emergency Health Services Care. For patients outside the healthcare system, the activation of EHS is a vital step in seeking rapid stroke care. Emergency health services can be defined as the full continuum of pre-hospital services necessary for the acute care of patients with stroke, including activation and dispatch EHS, field triage, and stabilization, and transport by ground or air EHS to a hospital or between facilities (Acker et al., 2007). Emergency health service providers (also referred to as paramedics, emergency medical technicians) are an integral part of the EHS team. They are often one of the first on-scene at a medical emergency and play a crucial role in the recognition, triage, transport, and management of patients with suspected stroke (Hodell et al., 2016). When EHS providers arrive on-scene, they are responsible for stabilizing the patient, taking relevant history and vitals, and then transporting the patient to the hospital (Acker et al., 2007). For cases of suspected stroke, EHS providers can screen patients before they are seen by a physician in the ED. As such pre-screening and other information provided by the EHS team can provide valuable information to the ED teams and help guide the course of inhospital management and care. In some systems of care, the practice of prenotification by EHS providers may also serve to alert the ED team to an incoming stroke case, enabling the activation of a stroke protocol and saving critical minutes in the stroke care pathway. A formal stroke diagnosis is typically made through a complex diagnostic workup involving a neurological assessment, imaging, and laboratory testing through the attending physician or neurologist at the receiving facility to rule out stroke mimics and contraindications to treatment options. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 32 Emergency Department Evaluation. According to the latest BC Guidelines (Guidelines and Protocols Advisory Committee, 2015), cases of suspected stroke and emergent transient ischemic attack should immediately be sent to an ED. Clinical practice guidelines recommend immediate clinical evaluation and investigations for all patients presenting to the ED with suspected acute stroke or transient ischemic attack (Canadian Stroke Best Practices, 2018). This is critical to confirming a diagnosis, determining eligibility for stroke therapies (including tissue plasminogen activator (tPA) and EVT), and establishing a long-term care plan to optimize outcomes. Initial Evaluation. Guidelines recommend rapid evaluation of airway, breathing, and circulation, along with a comprehensive neurological exam to determine deficits and stroke severity using common means of measurement, including the National Institutes of Health Stroke Scale (NIHSS) (Canadian Stroke Best Practices, 2018) or the Cincinnati Stroke Scale (GPAC, 2015). Other forms of recommended assessments include heart rate and rhythm, blood pressure, oxygen saturation, temperature, hydration status, presence of seizure activity, and acute laboratory investigations, including a complete blood count, electrolytes, random glucose, creatinine, and coagulation status (Canadian Stroke Best Practices, 2018). Diagnostic Imaging. Imaging is essential for determining stroke etiology. Developments in diagnostic imaging techniques have included the advent of CT imaging in the 1960s, as well as MRI imaging in the mid-1980s. Both technologies have allowed for a better distinction between cerebral ischemia and hemorrhage, as well as improved the ability for visualization of infarct size and location of bleeding (Caplan, 2016). The advent of each is considered a key milestone in the technological revolution of diagnostic imaging. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 33 Clinical practice guidelines advocate for all patients with suspected acute stroke to undergo non-contrast CT or MRI scans. For patients arriving within four and a half hours of symptom onset, immediate non-contrast CT (NCCT) is recommended without delay and prior to other evaluation (Canadian Stroke Best Practices, 2018). For those arriving within six hours of symptom onset who may be candidates for EVT, immediate non-contrast CT and CT angiography are recommended (Canadian Stroke Best Practices, 2018). The use of a validated triage tool, such as ASPECTS (Alberta Stroke Program Early CT Score), to facilitate the rapid identification of potential candidates for interventions such as EVT is also encouraged (Canadian Stroke Best Practices, 2018). For primary stroke facilities, such as those with CT imaging and the ability to provide tPA, but without CT angiography capabilities, the rapid transfer of patients to CT angiography-capable facilities is strongly encouraged (Canadian Stroke Best Practices, 2018). Finally, clinical practice guidelines also emphasize that patients arriving between six and 24 hours of symptom onset or with the time of onset unknown, should also undergo immediate imaging with non-contrast CT, CT angiography, and CT perfusion, or MRI with magnetic resonance angiography and magnetic resonance perfusion where available (Canadian Stroke Best Practices, 2018). Thrombolytic Therapy. Thrombolytic agents remain a first-line treatment in the management of stroke. The 1950s marked the first use of thrombolytic treatments (Sloan, 1987). Substances like streptokinase and bovine or human thrombolysins were some of the earliest thrombolytics and were administered intravenously to patients with coronary artery thrombosis. In the 1980s, three decades since the earliest use of thrombolytics, there was renewed interest among neurologists for the use of thrombolytics in stroke patients after their EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 34 success in being used to treat patients with coronary artery thrombosis. Small observational studies involving thrombolytics that took place during the latter part of the 1980s and 1990s showed promise, which led to an investment in larger randomized controlled trials (Caplan, 2016). In the mid-1990s the New England Journal of Medicine published positive results showing the efficacy of intravenous thrombolysis in patients with acute ischemic stroke (National Institute of Neurological Disorders and Stroke rt-PA Stroke Study Group, 1995). Some six months after this publication, the U.S Food and Drug Administration (FDA) approved the use of recombinant tPA, alteplase, in stroke patients within three hours of symptom onset (Zivin, 2009). Shortly thereafter, regulatory agencies across Europe and in Canada approved the use of tPA three to four and a half hours after initial symptom onset (Hacke et al., 2008). While there are currently phase three clinical trials underway exploring the efficacy of tenecteplase as tPA for acute ischemic stroke, alteplase (henceforth referred to as tPA), remains the only FDA-approved and therefore most widely used form of thrombolysis in the world (Warach et al., 2020). The use of tPA for ischemic stroke facilitates the breakdown of the occluding clot and allows for the recanalization of the affected blood vessel (Caplan, 2016). This restoration of blood flow is essential to salvaging brain tissue (Canadian Stroke Best Practices, 2018). However, brain tissue is sensitive to ischemia and can undergo necrosis in short order, making the administration of tPA a time-sensitive process (Zivin, 2009). In addition to time, there are important historical, clinical, laboratory, and imaging contraindications for tPA administration. Inclusion criteria include measurable neurological deficit and presentation within four-and-a-half hours post symptom onset (Caplan, 2016). Exclusion criteria include current intracranial hemorrhage, subarachnoid hemorrhage, active internal bleeding, bleeding EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 35 diathesis, current or severe uncontrolled hypertension, age over 80 years, NIHSS score greater than 25, a history of diabetes or stroke, the use of anticoagulants (regardless of recent INR), and recent (within three months) intracranial or intraspinal surgery or serious head trauma, presence of intracranial conditions that may increase the risk of bleeding (e.g., some neoplasms, arteriovenous malformations, or aneurysms) (Powers et al., 2015). When compared with placebo, intravenous tPA administered within three to four-anda-half hours of symptom onset has been shown to significantly improve clinical outcomes, defined by a score of zero or one on the modified Rankin scale (42.5% versus 52.4%, OR 1.35; 95% CI 1.0-1.65, p=0.004) (Hacke et al., 2008). There is also ongoing debate and investigation into the possibility of extending time to treatment window based on the findings of the WAKE-UP (Barrow et al., 2019) and EXTEND (Leira & Muir, 2019) trials as well as the efficacy of tPA in patients with larger vessel occlusion and the use of tPA in patients prior to EVT (Moshayedi et al., 2020). However, until more concrete evidence of the effectiveness and safety of altering the current treatment paradigm emerges, this represents a field with strong and ongoing scientific interest. Endovascular Thrombectomy. Despite concentrated efforts to boost rates of tPA administration, many patients remain ineligible for the life-saving treatment due to late presentation, other contraindications, or delayed access to medical care (Hacke et al., 2008). This, alongside the combination of suboptimal clinical outcomes resulting from the use of tPA, has driven the search for newer and better treatment strategies. Endovascular thrombectomy is one such option that has been touted as a life-saving alternative for patients who are ineligible for thrombolytic therapy or for those in whom this treatment proves to be EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 36 ineffective (Caplan, 2016). In this procedure, a retrievable stent is used to remove large occlusions through blood vessels. While ideal candidates for EVT are limited to those with a proximal occlusion, a large penumbra, and a small core infarct, five recent large-scale clinical trials have demonstrated its effectiveness in treating large vessel occlusions (Goyal et al., 2016). More specifically, EVT was found to significantly reduce disability at 90 days compared to the control group (adjusted OR 2.49; 95% CI 1.76-3.53, p<0.0001). Although EVT has an added benefit of an expanded treatment window of 24 hours (Boulanger & Butcher, 2018) compared to the shorter window for tPA, each hour increase from stroke onset to EVT results in a 5.3% decrease probability of functional independence, defined by a score of zero to two on the modified Rankin scale (Mulder et al., 2018). This is important given that the transport of patients from rural areas to EVT-capable facilities in many countries, including Canada, remains complicated. Therefore, at present, tPA remains the main first-line treatment available to those located within these settings who experience an ischemic stroke. Neuroprotectants. Neuroprotecants are emerging as a promising area of stroke care that aim to improve stroke outcomes by preserving brain tissue. While research is continuing to investigate their effectiveness in various settings, one particular area of interest is the potential benefit of the administration of these agents in the prehospital period. One of the most promising trials investigating neuroprotectants for stroke is ongoing in Canada. The Field Randomization of NA-1 Therapy in Early Responders (FRONTIER) is a Canadian clinical trial running from June 2015 to June 2020 (Buick & Drennan, 2016). This trial is testing the feasibility and effectiveness of the neuroprotectant NA-1, the protein inhibitor PSD95. NA-1 prevents the formation of the free radical, nitric oxide which combines with EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 37 other superoxides formed by the mitochondria to form a very potent neurotoxin (Buick & Drennan, 2016). As such, NA-1 does not target the site of occlusion in acute ischemic stroke but rather limits the amount of damage that occurs in the ischemic but viable region of the brain, which in turn can have important impacts for reducing patient morbidity and mortality. If successful, it would be the greatest advance in acute stroke care since the advent of thrombolytic therapy, having global implications for patients with stroke. To date, neuroprotectants are emerging as a promising area of healthcare and are providing renewed attention to pre-hospital and EHS care. In summary, there have been noteworthy advances in imaging techniques and the development and refinement of pharmaceuticals over the past 40 years. This has led to a deeper understanding and improved treatment of stroke. Progress has been made in the form of thrombolytics, antiplatelet therapies, anticoagulants, EVT, and in the form of treating risk factors such as hypertension and dyslipidemia (Caplan, 2016). Researchers are constantly exploring which treatments are most suitable for which patients. Increasing consideration is being given factors such as age, comorbidities, and time elapsed since onset to determine the most effective course of management. In the current context, it is the earliest therapeutic approaches that still form the foundation of modern-day stroke care and offer the most potential for improving morbidity and mortality. Furthermore, rapid access to these lifesaving treatments, including initiating the use of EHS for safe and efficient transport to the hospital, remains the most fundamental of actions to take during an acute stroke event. Using Emergency Health Services for Transport to Hospital in an Acute Stroke Event Emergency health services, as previously stated, can be defined as the full continuum of pre-hospital services necessary for the acute care of patients with stroke, including 911 activation and dispatch, emergency medical response, field triage and stabilization, and EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 38 transport by ground or air EHS to a hospital or between facilities (Acker et al., 2007). Due to the time-sensitive nature of stroke, the use of EHS remains the most recommended form of transport to the ED. However, a recent report by the CIHI (2016) identified that more than one-third of stroke patients do not arrive by EHS. This is important because EHS providers play a pivotal role in the assessment, management, and safe transport of stroke patients. Emergency health service providers are equipped with assessment tools like the NIHSS or the Cincinnati Prehospital Stroke Scale (CPSS) to assist them in their assessment of a potential stroke (Acker et al., 2007). The use of these aids can help with more rapid and accurate identification of stroke thereby reducing the time it takes for the patient to be transported to the ED (Caplan, 2016). Faster transportation to the ED can also impact the receipt of patient care, allowing the course of treatment to begin in a timely fashion. As such the use of such assessment scales in EHS practice has been recommended in many clinical practice and care guidelines (GPAC, 2015). The association between the use of EHS and the impacts on mortality, morbidity, use of thrombolytic therapies, and access to diagnostics, including the time to CT or MRI imaging have been of particular interest to stroke and health services researchers. This association has mainly been explored from the perspective of EHS providers notifying the receiving facility of a possible stroke case before they arrive at the ED. Emergency health service providers can pre-notify the receiving facility en route to the hospital which can help initiate the chain of acute stroke protocols, effectively reducing the delay of patient receipt of in-hospital care by several minutes (Hsieh et al., 2016). Early studies have demonstrated a reduction in time to in-hospital treatment due to prenotification for patients with suspected acute stroke (Barr et al., 2006; John et al., 2005; Lopez-Hernandez et al., 2005; Meijer et al., EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 39 2004; Memis et al., 2008; Patel et al., 2011; Palomeras et al., 2008; Stead et al., 2008; Tatschl et al., 2008; Zerwic et al., 2007). As a result, EHS use may be an important determinant of long-term stroke outcomes. These findings have led to the American Heart Association (AHA)/American College of Cardiology (ACC) and European Stroke Organisation (ESO) guidelines recommending the practice in cases of suspected stroke (Adams et al., 2007). In addition to the effectiveness of time reduction associated with the use of prenotification practices, numerous studies around the world have demonstrated the link between EHS transport for acute stroke to shorter arrival times at the ED (Barr et al., 2006; Bohannon et al., 2003; John et al., 2005; Lacy et al., 2001, Menon et al., 1998; LiraMamani et al., 2004; Lopez-Hernandez et al., 2005; Meijer et al., 2004; Memis et al., 2008; Ossemann et al., 2001; Patel et al., 2011; Palomeras et al., 2008; Stead et al., 2008; Tatschl et al., 2008; Yoneda et al., 2001; Wang et al., 2002; Wester et al., 1999; Williams et al., 1997; Zerwic et al., 2007) and this will be further explored in the literature review (Chapter Two). Presentation Delay The timely presentation of those with suspected stroke symptoms, along with the early use of EHS for presentation to the ED, is important for all stroke types and provides timely access to diagnostic services to help inform the course of treatment and management (Heart & Stroke Foundation of Canada, 2017). Despite the effectiveness of thrombolytic therapy in patients presenting with acute ischemic stroke, only an estimated 1 to 8% of eligible patients receive this evidence-based treatment (Adeoye et al., 2014). Presentation delay in the prehospital period is a key factor preventing greater use of thrombolytic therapy and can be dependent on several factors, such as patient, family member, or bystander recognition of symptoms, initiating the use of EHS, EHS response times, receiving facility EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 40 resources, and the healthcare response, including diagnostics and imaging in the ED or stroke unit (Canadian Stroke Best Practices, 2018; Carroll et al., 2004; Iguchi et al., 2006; Jurkowski et al., 2008; Mandelzweig et al., 2006). Due to the time-sensitive nature of stroke, numerous efforts have been made to reduce delays associated with stroke care, including educational interventions for patients, physicians, EHS providers, nurses, allied healthcare staff, and the general public, streamlining of hospital processes, and changes to EHS pre-and in-hospital care pathways (Canadian Stroke Best Practices, 2018). Despite these attempts, a considerable amount of time may still be lost before a patient makes it to the ED (Moser et al., 2007). A major barrier to timely patient receipt of emergency medical care for stroke, including the administration of thrombolytic therapy, is patient presentation delay. While factors associated with EHS use and presentation delay are explored further in the literature review (Chapter Two), there are other system-level challenges and contextual factors that can prevent rapid access to treatments and create further inequities for certain populations. For example, geographic factors, which are of importance in the context of the current work, can present serious accessibility challenges and as such warrant discussion. A Rural and Equity Lens on Stroke Care Universal access to medically necessary services is one of the core principles of Canada’s publicly funded single-payer system (Romanow, 2002). However, not all Canadians are equal recipients of this care. The landscape of Canadian healthcare has evolved in part due to the nation's vast geography, population dispersion patterns, and concerns surrounding system sustainability. Services have become increasingly centralized and there is a shift towards minimally invasive procedures replacing the more complex procedures requiring extended hospitalization (CIHI, 2007; Halpern et al., 2010). EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 41 In Canada’s rural, remote, and northern communities, population dispersion patterns, poorer population health, and considerable human and health resource shortages present challenges to the delivery of healthcare services (Hanlon & Halseth, 2005; Mitura & Bollman, 2003; Pitblado et al., 1999). Moreover, rural and remote areas of Canada have larger populations of Indigenous People, long known to suffer from poor health at a greater rate than the general Canadian population (Adelson, 2005; Eversole, 2005; Gallaher et al., 2009; Garner et al., 2010; Gracey & King, 2009; Heart & Stroke Foundation of Canada, 2017; Indian and Northern Affairs Canada, 2009; King et al., 2009; Kondro, 2006). Unfortunately, stroke is no exception. Indigenous People are both at a higher risk of having a stroke but are also more likely to die as a result. For example, the mortality risk for stroke is two times as high for Indigenous People as the general Canadian population (Heart & Stroke Foundation of Canada, 2017; Kapral et al., 2020). Health services, especially those required for complex clinical cases and involving specialized procedures are often limited to larger urban areas (Dixon & Welch, 2000). This effectively contributes to the delay and/or denial of evidence-based medicine for individuals living in smaller urban, rural, and therefore chronically underserved areas (Leira et al., 2008). Not only are healthcare services like emergency treatment (Hoot & Aronsky, 2008) and rehabilitation limited, but psychosocial supports are also lacking or non-existent in many smaller communities. As such, patients may need to travel for these services contributing to added risks associated with traveling over long distances, including inclement weather and potentially dangerous road conditions. Additionally, there are often financial costs patients may be responsible for. This includes paying out of pocket for things like incidentals, meals, EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 42 accommodation, and time off from work (Pesut al., 2010; Regan & Wong, 2009; Sibley & Weiner, 2011) which can further widen health inequities between rural and urban residents. Comprehensive guidelines, like the Canadian Stroke Best Practices (2018), outline clear benchmarks for stroke management and prevention. These include rapid triage, immediate neuroimaging, the use of thrombolytics in ischemic stroke, and the transfer of patients eligible for EVT. However, many rural hospitals have limited access to CT scanners which are critical in the early diagnosis and management of acute stroke (Fleet et al., 2013). These challenges are in part reflected by higher 30-day in-hospital mortality rates for stroke in rural Canada (Fleet et al., 2018). For example, Fleet et al., 2018, undertook a Canada-wide study examining 30-day post-stroke in-hospital mortality rates between rural and urban teaching hospitals. They found that the 30-day mortality rate ranged from 18.3% to 21.0% in rural hospitals compared to 14.1% to 16.8% for urban hospitals. They also found that while 92.0% of rural hospitals had basic x-ray access, only 11.0% of these rural hospitals had CTimaging, 1.0% had MRI-imaging, 21.0% had an intensive care unit, and 94.0% had laboratory services. As such, this limited access to in-house services that are critical to early diagnosis and management of stroke makes achieving clinical benchmarks and standards of care in smaller urban, rural, and remote areas inherently challenging and at times unrealistic and unachievable. Several factors, including geography, resource and service limitations, and poorer population health can impact these timeframes and patient outcomes. In addition to health human resource challenges (Morley et al., 2018), the safe and timely transport of patients in rural areas is often different from that in urban centers. The combination of providing first response services and emergency care is inherently complicated in rural settings. The EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 43 transport of high acuity patients in rural settings presents unique challenges for frontline health service providers. In BC, the more limited availability of EHS services, including advanced life-support trained paramedics outside large urban centres, coupled with difficult terrains and severe weather, can result in challenging travel conditions by land, air, and water (Kornelsen et al., 2016) for rural residents. Such challenges are not unique to Canada; similar challenges for patients accessing health services have been found to exist across rural and remote settings worldwide, including Australia, New Zealand, and the United States (Fleet et al., 2013). Overall, this provides a unique context through which to examine stroke and the impacts of pre-hospital care. Summary Stroke is a major public health problem with serious economic impacts and high rates of morbidity, mortality, and disability (Heart & Stroke Foundation of Canada, 2017). Early access to EHS is essential for the timely receipt of evidence-based treatment and improved patient outcomes. Despite the known benefits of using EHS for stroke, there are important access challenges that lead to its underutilization. For example, there may be limitations in service availability for those residing in smaller urban, or rural and remote areas. In other cases, patients may fail to use EHS in the event of an acute stroke after being unable to recognize symptoms. As such, developing a more comprehensive understanding of the factors influencing user-initiated mobilization of EHS for acute stroke and the impact of EHS-arrival on in-hospital outcomes, particularly in centers without established stroke units, is essential to the refinement of responsive healthcare services and effective health service delivery. The next chapter, Chapter Two, presents the literature review, including a discussion on how patient mode of transportation to the ED can impact receipt of emergency medical care and outline the factors that can influence patient presentation following stroke. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 44 Chapter Two: Literature Review This chapter provides an overview of the literature examining the use of EHS during an acute stroke event. The chapter begins with an outline of the scope and method of this review then continues to detail the findings. Finally, the chapter concludes with a summary of the key findings and gaps in the literature reviewed. Problem Formulation The goal of this integrative literature review was to examine the transport practices and help-seeking behaviours of individuals following the onset of acute stroke. In particular, this review aimed to answer the following two questions: “How does the mode of transportation to the ED impact patient receipt of medical care in the ED?” and “What is known about what influences the decision to seek EHS for acute stroke?” Understanding these factors that can influence the user-initiated mobilization of EHS is essential to the refinement of healthcare services and ultimately improved patient outcomes. In the context of this doctoral study, examining the literature provides a foundation for the research and allows for the identification of where gaps and shortcomings exist in the current knowledge base. As such, the use of an integrative format allowed for a broad review of the research literature to identify and understand issues that are of relevance to practice. Literature Search An integrative review of the literature was undertaken. The review methods, informed by the work of Whittemore and Knalf (2005), encourage the inclusion of qualitative, quantitative, and mixed or multi-method works with diverse methodological foundations to generate a comprehensive understanding of focal issues. The advantages of integrative reviews include the ability to incorporate a broad scope of literature to allow for a more complete understanding of the topic of interest and the flexibility to combine data from EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 45 theoretical and empirical literature (Mendes et al., 2008). While the inclusion of studies of different research designs can make the analysis challenging, these variations have the potential to increase the depth and scope of the reviewer’s conclusions (Mendes et al., 2008). Although integrative reviews lack the formal processes of other reviews, such as systematic reviews (Moher et al., 2007), some systematic practices were incorporated to help focus the scope of this work. The search methods were then undertaken following integrative review methodology. First, the identification of a theme and selection of research questions were determined to allow for a specific focus on EHS utilization and pre-hospital care. From this, a two-part research question was used to guide this review. Second, the literature search and documentation of the search procedures were undertaken with the intent of reproducibility. A preliminary scoping search of the relevant literature was undertaken using Google Scholar to ensure robustness and the use of the most relevant search terms. These initial search terms used included “stroke”, “emergency health services”, “patient”, “presentation delay”, and “emergency department”. This led to the retrieval of 43,300 results. The first 25 articles were then reviewed to identify a set of relevant and comprehensive search terms to inform the main literature search. Third, a search strategy was developed and underwent peer review by the Health Sciences Librarian at the University of Northern BC. The consultation was undertaken to formally review the search strategy and to identify key medical and health services databases. From this, the search strategy was further refined to include a final cohort of search terms and MeSH headings that would allow for the most comprehensive and robust search. Finally, research databases, including Medline Ovid (US National Library of Medicine, National Institutes of Health; Bethesda, Maryland USA), Cumulated Index to Nursing and Allied EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 46 Health Literature (CINAHL), PsychInfo, and Biomed Central were tested. However, no other additional relevant results were found using databases other than those generated by the Medline Ovid database. (CINAHL search resulted in 18 articles, one article was selected for review but was ultimately excluded as it examined responses to stroke and stroke mimics; PsychInfo search resulted in 1 article which upon closer inspection was excluded as it explored agreement of stroke patient assessments between stroke ambulance nurses and physicians, and Biomed Central search in 9 articles 7 of which were also captured in the Medline Ovid search while 2 were excluded upon closer inspection as they examined responses to stroke and stroke mimics). Therefore, only data from the Medline Ovid database was retrieved. Finally, to ensure that appropriate literature was captured, this database was searched using a combination of search terms and keywords, including stroke, prenotification, emergency health services, time, delay, arrival, admission, presentation, thrombolysis, symptom, onset, warning signs, education, knowledge, awareness, recognition, public, population, patient*. The initial search was run from 1990 onwards but the final search was limited to full-text articles published in the English language between 2007 and June of 2018. Using a specified period of time allowed for capturing the evolution of literature in this field and ensured that most of the contemporary studies were included to align with current clinical practice guidelines. The search was updated in June of 2019, December of 2019, and March 2020, August 2020, and April 2021 to ensure completeness and the inclusion of all relevant sources. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 47 Inclusion and Exclusion Criteria To determine their eligibility for review, articles were first screened by the title and abstract and then underwent a full-text review. To ensure that the review was sufficiently focused, inclusion and exclusion criteria were used to guide the selection and appraisal activities. The inclusion criteria included: 1) articles that were focused on stroke within the context of emergency medical services, emergency health services, or the emergency department; 2) Peer-reviewed English language original research studies of any design type, size, or patient population were included, including qualitative, quantitative, mixed methods that were dated between January of 2007 and April of 2021; and 3) articles were available in full-text through electronic databases at the University of Northern BC or partner post-secondary institutions. Articles were excluded if they did not meet the criteria above, did not involve patients and/or their caregivers, or examined hypothetical responses to acute stroke in community populations. A grey literature scan was not conducted and non-peer-reviewed works and secondary source materials, including books, book chapters, commentary, opinion, letters, editorials, symposium pieces, conference abstracts, and posters, were not included. Data Evaluation The Medline Ovid search resulted in 14 articles of which 11 were included. At this point, a hand search of articles was undertaken by reviewing the reference lists of these 11 articles to ensure that all key sources were captured and considered for inclusion. This resulted in a further 16 additional articles for a total of 30 articles. After searching Medline Ovid, a second search was undertaken using Google Scholar (Google; Mountain View, California USA). The first 15 pages of Google Scholar were reviewed and identified an EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 48 additional 21 articles, for a total of 51. Duplicates were found between the searches of Medline Ovid and Google Scholar, therefore, it was determined that saturation had been achieved. After the removal of seven duplicates through a review of the abstracts, 19 additional articles were excluded for not meeting inclusion and criteria. A final cohort of 25 articles were included in this review. The captured literature included 17 quantitative studies and eight qualitative. An overview of the literature search strategy steps is provided in Figure 4. Data Analysis. A full-text review of the identified literature was performed. The extraction of information was undertaken using the Critical Appraisal Skills Programme tools ([CASP], 2017). These tools allowed for the capturing of key methodological features of each of the studies, as well as a critical review of the findings, and an assessment of the methodological quality including study strengths and limitations. Following this, the evaluation of studies to be included in the review was performed and results were interpreted and findings collated. A close reading of all articles was performed and articles examined for similarities and differences, with key findings becoming synthesized and recurring themes organized thematically. Study characteristics including authors, year, country of origin, sample size, indicators explored and main findings (Table 1.), determinants of EHS use (Table 2.), and factors associated with EHS use (Table 3.) were extracted. These findings were then presented in table format to allow for easier visualization and reference of key themes and main study findings. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 49 Figure 4 Literature Search Strategy Based on the PRISMA Flow Diagram Format Records identified through database searching of CINAHL (n=18); PsychInfo (n=1); Biomed Central (n=9); Medline Ovid and hand searches of reference lists of these articles (n=30) Additional records identified through Google Scholar (n=21) Records after combining results from all sources (n=51) Records after duplicates removed (n=43) Full-text articles assessed for eligibility (n=31) Studies included in review (n=25) Records excluded (n=14) Full-text articles excluded with reasons (i.e., incorrect population, did not explore EHS use, focused only on transient ischemic attack) (n=6) EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 50 Review Findings Three main themes emerged from the analysis of the 25 included articles. They included: 1) the association of EHS use and in-hospital stroke care; 2) determinants of EHS use for acute stroke and; 3) factors influencing presentation delay for acute stroke. The following sections provide a critical review of the findings of this integrative review and conclude with a summary of key knowledge gaps. Association of EHS Use with In-hospital Care The transport of patients with suspected stroke to hospital by EHS providers emerged as both a safe and effective means for access to timely and time-sensitive stroke care. Ten studies were captured in the review that explored the association between the use of EHS and in-hospital care (Abdullah et al., 2008; Bae et al., 2010; Hsieh et al., 2015; Hung et al., 2015; Lin et al., 2012; McKinney et al., 2013; Mosley et al., 2007; Patel et al., 2011; Quain et al., 2008). A summary of the main findings is provided in Table 1 at the end of this section. All studies related to EHS use and patient outcomes were quantitative and none of these examined specific differences in access to treatment based on the mode of transport whether EHS or self-transport. However, the available literature focused on EHS use from the perspective of prenotification and the impact of this practice on subsequent stroke care. Two subthemes emerged from the analysis of these studies, including the time to assessment and time to neuroimaging and the administration of thrombolytic therapy. Time to Assessment. The role of EHS and its relationship to stroke assessments emerged from the review of the literature. One study was identified that examined the association between EHS prenotification on the in-hospital stroke pathway, specifically the time to physician assessment (Mosley et al., 2007). Mosley and colleagues (2007) undertook a prospective, open observational study to explore patterns of care for stroke patients. This EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 51 study sought to examine the time from the call for EHS assistance to the first medical assessment in the ED. Consecutive patients presenting to the ED from three metropolitan hospitals with stroke units in Melbourne, Australia were recruited over six months. Patients over the age of 18, with an initial ED diagnosis of stroke or transient ischemic attack, were eligible to participate provided they were not transferred from another facility before arriving at one of the three study hospitals. Of the 357 patients (45.0% male; mean age 79.0 years) presenting to these three hospitals, 58.0% presented by EHS. After diagnosis was confirmed, 187 were included. Of these, 121 were found to have an ischemic stroke, 24 an intracerebral hemorrhage, and 42 a transient ischemic attack. In this study, stroke recognition by EHS providers and hospital prenotification were associated with a shorter time to initial physician assessment in the ED. In cases where EHS providers recognized stroke and prenotified the hospital, time to assessment was found to average 52 minutes (p=0.001), compared to 87 minutes in cases where the stroke was not recognized. There were no statistically significant differences in prehospital times (median 49 versus 44 minutes, p=0.08) in cases where the stroke was not recognized or where the stroke was recognized but hospitals were not prenotified. While this study by Mosley et al. (2007) begins to establish the potential of faster inhospital assessment linked to EHS provider stroke recognition and prenotification practices, some important limitations exist and should be considered. First, this study was undertaken in large metropolitan hospitals with access to dedicated stroke units. Large metropolitan hospitals with dedicated stroke care facilities typically have established practices and protocols for stroke care and management. As such, limiting the analysis to these centres, may not provide a clear picture of whether the same benefits hold for smaller or rural EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 52 hospitals that may not have access to this level of stroke care organization. Despite this, this study lends strong support to the importance of stroke recognition by EHS providers and the practice of prenotification in reducing delays to treatment. Time to Neuroimaging and the Administration of Thrombolytic Therapy. Evidence-based stroke interventions, including timely access to neuroimaging and administration of thrombolytic therapy, are essential to optimizing patient and health system outcomes. In this review of the literature, ten studies were captured that examined the association of EHS use with diagnostic neuroimaging and administration of thrombolytic therapy (Abdullah et al., 2008; Kim et al., 2009l Bae et al., 2010; Hung et al., 2015; Hsieh et al., 2016; Lin et al., 2012; McKinney et al., 2013; Mosley et al., 2007; Patel et al., 2011; Quain et al., 2008). These studies specifically looked at the association between EHS prenotification on the in-hospital stroke pathway, including access to neurological imaging and thrombolytic therapy. The majority of studies have found that prenotification is associated with significant reductions in door-to-imaging times (Abdullah et al., 2008; Bae et al., 2010; Quain et al., 2008; Patel et al., 2011; Lin et al., 2012; Hsieh et al., 2015; McKinney et al., 2013; Mosley et al., 2007). These are discussed in further detail below. First, Abdullah et al. (2008) undertook a retrospective observational study to investigate whether prenotification by EHS providers would increase the use of intravenous and endovascular thrombectomy in patients with suspected stroke presenting to a tertiary stroke care centre with high baseline rate use of thrombolytic therapy. The authors analyzed medical records data on all consecutive acute stroke patients from March 2004 to June 2005 transported by EHS to their facility within six hours of symptom onset. In addition to reviewing medical charts, they also reviewed digital voice recordings of the EHS EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 53 communications associated with these records, as well as the in-hospital time intervals and outcomes from the hospital stroke database. Among the 118 patients (55.1% male, 72.8 years) included in the study sample, they found that prenotification occurred in 44 cases. There were no significant differences between those with prenotification and those without in terms of age, sex, prior stroke history, median NIHSS score, or mean onset-to-ED arrival. However, the findings indicated that prenotification by EHS providers was associated with a two-fold increase in the administration of thrombolytic therapy (41.0% versus 21.0%, p=0.04) as well as a 17.0% shorter door-to-CT time in the prenotification group (40 minutes versus 47 minutes, p=0.01). Interestingly, Abdullah and colleagues (2008) also found that the advance notification by EHS shortened time to CT and increased administration of thrombolytics despite the facility having implemented mandatory stroke protocols, including immediate imaging, for all acute stroke patients. This finding has been echoed in other studies captured in this review that have found that prenotification increases the rates of thrombolytic therapy administration two to three-fold as compared to patients who were transported to the ED without prenotification (Fassbender et al., 2017; Bae et al., 2010; Quain et al., 2008; Patel et al., 2011; McKinney et al., 2013; Carter et al., 2014). Similar to Abdullah et al. (2008), Bae et al. (2010) undertook a retrospective study to examine the impact of prenotification practices on stroke care at a large tertiary teaching hospital in metropolitan South Korea. They specifically sought to explore how the practice of EHS prenotification impacted the transfer of patients, imaging processing times, and the administration of intravenous thrombolysis. Through a retrospective chart review, they identified 102 eligible patients with acute ischemic stroke who presented by EHS to the teaching hospital. Of this sample, 55 were transported to the ED by EHS. Bae and colleagues EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 54 (2010) found that the accurate detection of stroke was much higher and the real transfer time much faster (90.9% versus 68.1%, p=0.005) in patients with an EHS prenotification call (47.7 ±23.1 minutes, p=0.004) than in those without prenotification (56.3 ±32.4 minutes). Likewise, both door-to-imaging time (17.8 ±11.0 minutes versus 26.9 ±11.5 minutes, p=0.01) and door-to-needle time for thrombolysis (29.7±9.6 minutes versus 42.1 ±18.1 minutes, p=0.01) were significantly shorter in the 18 patients for whom there was EHS prenotification compared to those for whom there was no prehospital notification. While the findings of this study demonstrate the beneficial effects of hospital prenotification by EHS providers, including reducing transfer time and in-hospital processing of stroke patients, some limitations exist. For example, this was an observational study based on a single hospital. Therefore, the generalizability of findings may not be as readily applicable to other populations, including those receiving care in smaller urban, rural, and remote hospitals. Other studies, like Bae et al. (2010), have similarly shown that the practice of EHS provider prenotification leads to faster imaging (Arrate et al., 2019; McKinney et al., 2013; Patel et al., 2011; Quain et al., 2008). For example, Patel et al. (2011) undertook a retrospective population-based observational study of the North Carolina Stroke Collaborative. Patel and colleagues (2011) wanted to determine the association between hospital arrival modes (EHS or non-EHS) with or without EHS prenotification and times for completion and interpretation of initial CT imaging for patients with suspected acute stroke. In this study, 52 acute care hospitals were included representing 39 of the 100 counties in North Carolina and 61.0% of all stroke cases in the state. A total of 13,894 stroke cases were examined and included patients with diagnoses of ischemic stroke, intracerebral hemorrhage, EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 55 subarachnoid hemorrhage, and transient ischemic attack. Patel and colleagues (2011) found that prenotification was associated with a significant reduction in door-to-imaging times (RR 3.0; 95% CI 2.1-4.1 versus RR 1.0; 95% CI 1.6-2.3), as well as interpretation of stroke within 45 minutes of prenotification (RR 2.7; 95% CI 2.3-3.3 versus RR 1.7; 95% CI 1.4-2.1). Overall, 21.0% of all patients with presumed stroke had received initial neuroimaging, with 23.0% of these having their imaging completed and interpreted within the recommended 25 to 45 minutes of ED arrival. Patients who had imaging within 25 minutes of ED admission had results interpreted within 20 minutes of scan. When adjusting for potential confounders, including patient characteristics (age, sex, race, insurance status, time of day, weekend or weekday arrival) and hospital characteristics (primary stroke centre, teaching hospital, and the number of beds), Patel and colleagues (2011) found that patients who arrived by EHS were more likely to have imaging completed within 25 minutes of arrival. Overall, this study supports the use of EHS prenotification to reduce in-hospital delays and promote timely imaging and diagnosis of stroke. However, there are important limitations to consider. First, this was a secondary analysis of a hospital database in which participation was voluntary. As such, this may have excluded proportions of the population. While the authors adjusted for patient and hospital characteristics, they were unable to adjust for stroke severity and this may impact on time-toimaging. Therefore, without adjusting for this in the analyses, it is possible that this is not truly representative of the wider stroke population in this region, with the association of rates and time-to-imaging potentially appearing weaker or stronger than in reality. Nevertheless, this study examines an important endpoint (CT imaging) that is an essential component of stroke care. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 56 Similarly, Lin et al. (2012) undertook a retrospective analysis of the American Heart Association and American Stroke Association’s GWTG-Stroke program to study the association between EHS use and in-hospital care. Lin and colleagues (2012) specifically sought to evaluate the association of EHS prenotification with the evaluation of acute ischemic stroke and treatment indicators, including door-to-needle times, door-to-imaging times, and rates of thrombolysis use in eligible patients. The GWTG-Stroke program, a webbased tool, collects clinical data on consecutively admitted stroke inpatients. Variables collected include patient demographics, past medical history, the onset of stroke symptoms, mode and time of arrival, in-hospital diagnostics, treatments, procedures, imaging studies, initiation time and complications of thrombolytic treatment, as well as discharge status and post-discharge treatment plan. A total of 936,702 patients were identified with ischemic stroke from 1635 hospitals across the United States from April 2003 through April 2011. Patients with in-hospital strokes, those transferred from other facilities, and those with missing data points were excluded from the analysis which resulted in a final sample of 371,988 patients. Analysis of the data revealed that prenotification occurred in 249,197 (67.0%) cases and was positively associated with shorter door-to-imaging times (26 versus 31 minutes, p<0.001) and shorter door-to-needle times (78 versus 80 minutes, p<0.0001). Interestingly, prenotification was more likely to occur in patients who were younger, Caucasian, male, or had documented atrial fibrillation. In contrast, patients with a history of previous stroke or transient ischemic attack, diabetes mellitus, peripheral vascular disease, hypertension, dyslipidemia, or heart failure were less likely to have prenotification undertaken by EHS. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 57 Overall, Lin and colleagues (2012) support the role of prenotification as an important but under-utilized means of improving rapid triage, evaluation, and treatment of patients presenting with acute ischemic stroke. While participation in the GWTG-Stroke program is voluntary and the accuracy of data relies on completeness of medical chart abstraction, the strength of this work is that it captures a large national sample of stroke patients over multiple years and presents details about demographics and measures of care. This increases the potential for the generalizability of the findings. Finally, Hsieh et al. (2016) undertook a retrospective observational study to investigate the effect of prehospital notification on acute stroke care in an urban city in Taiwan. The prospectively collected dataset included data on patients treated at nine hospitals and the EHS system in Taipei from September 2012 to December 2014. During this time, EHS providers prenotified the receiving hospital if patients had a positive Cincinnati Prehospital Stroke Scale (CPSS) score, symptom onset within three hours, and a capillary glucose test result of >60 mg/dL. Demographics, information on final diagnoses, and data association with stroke for all patients with acute stroke who presented within three hours of symptom onset were collected. A total of 928 patients presented to the ED less than three hours following stroke onset. Prenotification occurred in 78.3% of cases (n=727) and was more likely to occur for patients who were male (64.5% versus 51.7%, p=0.001). Interestingly, while fewer patients in the prenotification group had a lower likelihood of previous stroke or cardiac disease history than the group without prenotification. The median door-to-CT time in the prenotification group was significantly shorter when compared to the group without prenotification (13 versus 19 minutes, p< 0.001). Although not statistically EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 58 significant, prenotification was also associated with shorter door-to-needle times (63 versus 68 minutes, p=0.138). This study, like the others, discussed previously, supports the role of prenotification for stroke patients to improve in-hospital care. However, this study was based in metropolitan cities, therefore, the findings may not apply to rural areas. Secondly, each of the hospitals included in this study had established in-hospital stroke protocols, therefore, the results may not generalize to hospitals without formalized procedures for acute stroke. Overall, analysis of the captured literature supports the notion of prenotification for patients with stroke. While there was variability in the study setting and the type of prenotification protocol implemented, including the type of stroke assessment scales used, the practice was associated with important reductions in treatment along the stroke care pathway. These included reductions in time to assessment (Mosley et al., 2007) and time to neuroimaging, and administration of thrombolytics (Mosley et al., 2007; Abdullah et al., 2008; Bae et al., 2010; Patel et al., 2011; Lin et al., 2012; Hsieh et al., 2016). As such, the practice of EHS prenotification has the potential for further streamlining stroke care processes for the provision of more timely care and improving patient outcomes. However, further research to explore its utility in less organized systems of stroke care, including rural, remote, and small urban centres is needed and an investigation into quality of care metrics, including mortality and disability is warranted. United States Abdullah et al. (2008) Retrospective chart review, pre-post design Retrospective chart review Mosley et al. (2007) Australia Study design Study n=118 n=198 Sample x x Time to Time to assessment imaging x Time to thrombolytic therapy administration Stroke care indicator explored Prenotification and the Impact on Key Stroke Care Indicators (n=10) Table 1 Summary of findings No significant differences between those with notification (n=44) and those without (n=74) in terms of age, gender, history of prior stroke, median National Institutes of Health Stroke Scale (NIHSS) score in the ED, the proportion with mild stroke (NIHSS score ≤4), or mean onset-to-ED arrival time. Door-to-CT time was 17.0% shorter (40 versus 47 minutes, p=0.01) in the advance-notification group, and thrombolysis occurred twice as often (41.0% versus 21.0%, p=0.04). Factors associated with the first medical assessment in the emergency department 60 minutes from the ambulance call and 10 minutes from hospital arrival included Glasgow Coma Scale 13 (p<0.001 and p=0.021) and hospital prenotification (p=0.04 and p<0.001). EHS provider stroke recognition and hospital prenotification were associated with shorter times from the ambulance call to the first medical assessment (p=0.001 and p<0.001). EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 59 Retrospective chart review Bae et al. (2010) South Korea England Prospective cohort using historical controls Retrospective chart review Quain et al. (2008) Korea Kim et al. (2009) n=102 n=437 n=678 x x x x x 33 patients received IV tPA without prehospital notification from the EHS. The mean real transfer time after the EHS call was 56.0±32.0 min. Among the 102 patients, 55 were transferred via the EHS to the emergency room for IV tPA. The real transfer time was much faster in patients with an EHS tPA call (47.7±23.1 min, p=0.004) than in those without one (56.3±32.4 min). The door-to-imaging time (17.8±11.0 min versus 26.9±11.5 min, p=0.01) and door-to-needle time (29.7±9.6 min versus 42.1±18.1 min, p=0.01) were significantly shorter in the 18 patients for whom there was prehospital notification and who ultimately The proportion of ischemic stroke patients treated with tPA increased from 4.7% (pre‐ intervention) to 21.4% (post‐intervention) (p< 0.001). Timepoint outcomes also improved, with a reduction in median times from symptom onset to ED arrival from 150 to 90.5 min (p=0.004) and from ED arrival to stroke unit admission from 361 to 232.5 minutes (p< 0.001). Of those treated with tPA, 43.0% had minimal or no disability at 3 months. After the pre-hospital notification system was implemented, the rate of IV t-PA use increased from 6.5% to 14.3%. Time of onset in patients with pre-hospital notification was much longer than in patients without (121.5±34.8 min versus 74.7±38.5 min, p< 0.01) notification but doorto-needle time was significantly reduced (28.9±11.4 min versus 47.7± 2.8 min, p< 0.01). EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 60 United States Lin et al. (2012) United States Patel et al. (2011) n=13,894 Retrospective n=371,988 chart review Retrospective chart review x x x x Prenotification occurred in 249,197 (67.0%) of EHS-transported patients. Among eligible patients arriving by 2 hours, patients with EHS prenotification were more likely to be treated with tPA within 3 hours (82.8% versus 79.2%, absolute difference +3.5%, p<0.0001, the NIHSS-documented cohort; 73.0% versus 64.0%, absolute difference +9.0%, p<0.0001, overall cohort). Patients with EHS prenotification had shorter door-to–imaging times (26 minutes versus 31 minutes, p<0.0001), shorter door-to-needle times (78 minutes versus 80 minutes, p<0.0001), and shorter symptom onsetto–needle times (141 minutes versus 145 minutes, p<0.0001). In multivariable and modified Poisson regression analyses accounting for the clustering of patients within hospitals, use of EHS prenotification was 21.0% had their neuroimaging completed and 23.0% had their neuroimaging interpreted by a physician within target times. Arrival by EHS (versus private transport) was associated with both neuroimaging completed within 25 minutes of arrival (EHS with prenotification: RR, 3.0; 95% CI 2.1-4.1; EHS without prenotification: RR, 1.9; 95% CI 1.6-2.3) and neuroimaging interpreted within 45 minutes (EHS with prenotification: RR, 2.7; 95% CI 2.3-3.3; EHS without prenotification: RR, 1.7; 95% CI 1.42.1). received tPA than in those for whom there was no prehospital notification. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 61 Taiwan Hung et al. (2015) United States McKinney et al. (2013) Retrospective chart review Retrospective chart review n=237 n=229 x x x x 1,082 stroke patients in the study period, 237 (21.9%) of them were sent by EHS. 46 patients were sent to ED with pre-arrival hospital notification by EHS providers. The group with pre-arrival hospital notification had shorter door-to-CT and door-to-doctor times than the no pre-arrival notification group. However, there was no difference in the time-lapse of door-todrug. Factors of pre-arrival notification and hemorrhagic stroke were associated with early completion of brain CT in 10 minutes, with an OR of 6.3 (95% CI, 3.14-12.74) and 1.9 (95% CI, 1.00-3.59), respectively. 229 patients (114 prenotification and 115 no prenotification) had a stroke within the study period. Patients with prehospital notification were older (69.5 years versus 61.5 years; p=0.0002), had more severe strokes (NIHSS score of 11.1 versus 6.9; p< 0.0001), and received IV tPA twice as often (27% versus 15%; p=0.024). Prenotification resulted in a significant reduction in all stroke time targets except door-to-treatment decision and tPA administration. independently associated with a greater likelihood of door-to–imaging times ≤25 minutes, door-to-needle times for tPA ≤60 minutes, onset-to–needle times ≤120 minutes, and tPA use within 3 hours. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 62 Taiwan Hsieh et al. (2016) Retrospective chart review n=928 x x 727 (78.3%) patients were in the prenotification group; of these, more were male, smokers, and presented with severe symptoms, and fewer had a history of prior stroke or cardiac diseases compared to patients in the non-prenotification group. The median door-to-CT time was significantly shorter in the prenotification group than among the non-prenotification group (13 versus 19 min, p< 0.001). Prenotification was associated with shorter door-to-needle time (63 versus 68 min, p=0.138). The sensitivity and PPV of prenotification of stroke were 78.3 % and 78.2 %, respectively. The door-to-needle time demonstrated a significant and highly negative association with the volume of patients receiving thrombolytic therapy (Spearman's correlation coefficient -0.90, p< 0.001). EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 63 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 64 Determinants of EHS Use Much interest in stroke-related EHS research has focused on identifying determinants of use, such as age, sex, stroke severity, socioeconomic status, and location of residence (i.e., rural or urban), to understand whether it is possible to know which features make a patient more likely to mobilize EHS for stroke. In this review, a total of nine studies that examined determinants associated with the use of EHS for acute stroke were identified. The available literature examined participant demographics such as age and sex as well as factors such as past medical history, type of stroke, stroke severity, and educational attainment. Some studies also explored situational factors such as the presence of a bystander and contact with a primary care provider. Of the nine studies captured, eight were quantitative (Adeoye et al., 2009; Chen et al., 2013; Ekundayo et al., 2013; Govindarajan et al., 2013; Kuster et al., 2013; Malek et al., 2014; Tataris et al., 2014) and one was qualitative (Mackintosh et al., 2012). These are summarized at the end of this section in Table 2. First, Adeoye et al. (2009) undertook a population-based retrospective epidemiological study to measure temporal trends in incidence and racial differences between stroke incidence and stroke risk factor profiles between African American and Caucasian Americans. A chart review was used to identify cases of stroke or transient ischemic attack, as well as information on symptoms, the point of first medical contact (primary care, ED, EHS), ED exam findings, vital signs, past medical history, medication use, social history, diagnostic testing and results, and short-term outcomes. Patients were excluded if they resided in long-term care, had a stroke as an inpatient, stroke was not the primary diagnosis, their stroke was of non-vascular origin, or they were under 18 years of age. After screening for eligibility criteria, a total of 3,008 cases of confirmed stroke or EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 65 transient ischemic attack were included in the analyses. EHS was used by 50.9% of patients and varied by stroke type. For example, 54.0% of patients with ischemic stroke, 72.0% of patients with hemorrhagic stroke, and 36.0% of patients with transient ischemic attack used EHS. Increasing age (OR=1.03 per year; 95% CI 1.02-1.04), worsening pre-stroke disability (OR=1.14 per point increase in pre-stroke modified Rankin scale; 95% CI 1.08-1.20), worsening stroke severity (OR=1.14 per point increase on the NIHSSS; 95% CI 1.12-1.15), hemorrhagic stroke (OR=3.02; 95% CI 2.10-4.32 compared to transient ischemic attack), and whether the stroke was at work versus at home (OR=1.66; 95% CI 1.02-2.70) were associated with increased EHS use. This population-based study provides important insights about patient characteristics into the use of EHS for stroke, however, it is not without limitations. These limitations include, not being able to ascertain who (patient or bystander) initiated the use of EHS and the potential that excluded cases due to incomplete data points may have affected the conclusions of this work. Like Adeoye et al. (2009), Chen et al. (2013) also investigated the factors associated with the use of EHS in patients with acute stroke but using a prospective design. A total of 1,344 patients (60.0% male; mean age 68.7 years) presenting to the ED of a university medical centre were included in the analysis. Patients were excluded if they had an unknown residence, had onset of stroke symptoms at a long-term care facility or hospital, or were transferred from another hospital. Variables for all patients with both hemorrhagic and ischemic stroke who did and did not use EHS were compared. Use of EHS (n=409; 30.4%) was significantly associated with a higher level of education (>6 years versus <6 years; OR=1.69; 95% CI 1.25-2.29), a higher NIHSS score (OR=1.08; 95% CI, 1.05-1.11), altered consciousness (OR=1.88; 95% CI, 1.25-2.84), and atrial fibrillation (OR=2.43; 95% CI, 1.71- EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 66 3.44). For patients with ischemic stroke, the use of EHS was significantly higher in cases of large vessel stroke (OR=3.04; 95% CI, 1.40-6.60) and large artery atherothrombotic stroke (OR=2.10; 95% CI, 1.22-3.62) compared to cases of lacunar infarction. There are some important limitations to this study. First, no data on the environment of patient residence was obtained, neither was any information on the patient's past medical history collected. This is important as these factors may affect utilization by patients or their family members. For example, EHS may be used when a patient has reduced mobility and lives in a high-rise building without an elevator. Second, there was no evaluation or adjustment for the severity of each symptom. Only the NIHSS score on arrival in the ED was used to measure the severity of stroke. This presents a potential limitation as a patient with a severe headache with a pain score of ten may use EHS, but their NIHSS score may be zero. Third, knowledge and awareness of stroke and attitudes toward EHS in patients with stroke were not evaluated which does not allow us to understand factors that could support EHS use. However, this work does allow us to understand the factors that work to support EHS use. Similarly, Ekundayo et al. (2013) undertook a retrospective epidemiological population-based study to describe the population of stroke patients transported to the hospital via EHS, determine whether disparities exist in EHS activation by stroke patients, and compared the timeliness of arrival, evaluation, and treatment of stroke between those who arrived by EHS and those who did not. Data from 204,591 patients admitted with ischemic and hemorrhagic stroke were analyzed. Hospital arrival by EHS was observed in 63.7% of patients. Older patients (males OR=1.21; 95% CI 1.19-1.22, p<0.0001, females OR=1.16; 95% CI 1.14-1.17, p<0.0001), those with Medicaid and Medicare insurance EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 67 (OR=1.16; 95% CI 1.14-1.17, p<0.0001), and those with severe stroke (OR= 20.4, 13.2-24.2; 95% CI 2.57-2.73, 5.45-6.01, 10.84-12.2, p<0.0001) were more likely to activate EHS. In contrast, minority race and ethnicity and living in rural communities were associated with decreased odds of EHS use. EHS transport was independently associated with earlier arrival (onset-to-door time, ≤3 hours; adjusted OR=2.00; 95% CI 1.93- 2.08), more prompt evaluation (more patients with door-to-imaging time, ≤25 minutes; OR=1.89; 95% CI 1.782.00), more rapid treatment (more patients with door-to-needle time, ≤60 minutes; OR=1.44; 95% CI 1.28-1.63), and more eligible patients to be treated with tissue-type plasminogen activator if onset is ≤2 hours (67.0% versus 44.0%; OR=1.47; 95% CI 1.33-1.64). There are limitations to this work, including its observational design and not being able to account for patient socioeconomic status, including income and educational level, something that previous studies have shown can impact EHS use among this patient population. Using a qualitative approach, Mackintosh and colleagues (2012) undertook a study to identify reasons why individuals contact or delay contacting EHS in response to stroke symptoms. Purposive sampling was used to recruit a sample of 19 stroke patients and 26 unique witnesses from three acute stroke units in northeast England who had called for medical help following the onset of stroke symptoms. Semi-structured interviews with stroke patients and witnesses were undertaken within 14 days of acute stroke and data were analyzed using thematic analysis following the Framework method (Gale et al., 2013). Patients ranged in age from 41 to 86 years of age. Out of the 45 cases of stroke, 40 occurred in the patient’s own home. In seven cases, where the stroke occurred at home, a previous stroke event was reported, while 15 patients reported a pre-stroke disability. One patient lived in sheltered housing and one in a long-term care facility where they experienced their EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 68 strokes: in each of these cases, a formal carer noticed the initial stroke symptoms and sought medical help. In other cases, stroke occurred in the workplace or community settings, including the supermarket and on public transportation. In these instances, bystanders played an important role in seeking emergency help. Analysis of the data identified five major themes that were found to be important in affecting the decisions of patients and witnesses including the interpretation of the signs and symptoms of stroke, response to symptoms of stroke, deflection and delay, prior knowledge and awareness of the Act F.A.S.T. campaign, and the roles and responses of medical services. Combinations of each of these themes play an important role in the decision-making process of patients and witnesses with the decision being a result of complex interactions of various factors. This study provides important insights into decision-making for seeking medical attention for acute stroke. It is strengthened by the inclusion of witnesses who can provide their accounts of help-seeking behaviors of patients after stroke and the sample, including both those who sought medical attention immediately as well as those who delayed. This work is not without limitations. For example, the data represents personal accounts and perceptions of the events which may not be representative of a wider population. Further, there is potential for recall bias due to possible cognitive impairments following stroke. Using an observational, secondary analysis design, Govindarajan et al. (2013) also explored the transport practices of those with stroke. In this study, Govindarajan and colleagues sought to investigate the proportion of stroke patients who arrive by EHS across the United States and to examine regional differences and factors associated with the mode of transport to the ED. Using the National Hospital Ambulatory Medical Care Survey, patients over the age of 18 with a primary diagnosis of stroke, based on previously validated ICD-9 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 69 codes, were identified. A total of 566 patients were identified and 50.4% arrived by EHS. Regional differences were found for EHS use, with patients living in the Northeastern United States having the lowest rate of EHS use. Overall, patients who presented to EDs in the Midwest (OR=0.56; 95% CI 0.31-1.01), the Southern (OR=0.45; 95% CI 0.26-0.76), or Western regions (OR=0.45; 95% CI 0.25-0.84) had higher odds of using EHS compared with those presented to an ED in the Northeast. Adjustment for confounders, including the level of insurance coverage, revealed that age was associated with the increased use of EHS. Further, when compared to those with Medicare, those with private (OR=0.48; 95% CI 0.28-0.84) or self-insurance (OR=0.36; 95% CI 0.14-0.93) had lower odds of using EHS. While this work provides important information concerning the use of EHS across the United States, including identifying nationwide trends, it was unable to account for the reasons behind these trends or identify patient-level factors for this disparity. Building on the theme of EHS transport, Kuster et al. (2013) undertook a post-hoc analysis on prospectively collected data of consecutive patients admitted to a tertiary Brazilian hospital with acute ischemic stroke with comparisons being made between the arrival by EHS group and arrival by other means. Of the 165 patients, 17.6% arrived by EHS and 82.4% arrived by non-EHS means. After multivariate adjustment, individuals with higher NIHSS score at presentation (OR=1.15; 95% CI 1.06-1.23 for each point on the NIHSS score) were less likely to use EHS, than were those with atrial fibrillation (OR=5.8; 95% CI 1.41-24.07), but more likely than those with lower blood pressure at hospital admission (OR=0.72; 95% CI, 0.56-0.93 for each mmHg). Patients arriving at the hospital by EHS had trends toward a lower door-to-imaging time and a higher frequency of thrombolysis therapy (13.0% in EHS users versus 5.0%, p=0.10) in patients arriving by non-EHS. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 70 The data demonstrate that in a Brazilian population with acute ischemic stroke, patients with more severe stroke, those with atrial fibrillation, and those with lower blood pressure at hospital presentation were more likely to use EHS. Further, while not statistically significant, there was a trend toward a lower door-to-imaging time and a higher frequency of thrombolysis therapy for those using EHS. Limitations of this work include not accounting for patient socioeconomic status, post-hoc design, and this being a single-site study undertaken in a tertiary urban private hospital. Targeting an underserved population, Malek et al. (2014) sought to examine a sample of patients receiving a Remote Evaluation of Acute Ischemic Stroke (REACH) telestroke consult in South Carolina, US regarding their awareness and perception of stroke symptoms related to the use of EHS and to assess possible racial and ethnic disparities. The REACH program was a telemedicine program to serve as web-based outreach for the evaluation and treatment of stroke in 13 non-urban hospitals in South Carolina. Patients were randomly selected from a larger sample of 2,264 patients by selecting every third patient in ranked order. Telephone surveys assessing the use of EHS were administered to 197 patients in the REACH program from March 2012 through January 2013. Univariate and multivariate logistical regression analysis revealed that factors associated with the use of EHS included NIHSS scores >4 (OR=5.4; 95% CI 2.63-11.25), unknown insurance status, including selfpay or not charged (OR=2.90; 95% CI 1.15-7.28), and perception of stroke-like symptoms as an emergency (OR=4.58; 95% CI, 1.65-12.67). Additionally, African-Americans were significantly more likely than Caucasians to call EHS (62.0% versus 43.0%). While this study provides important insight into factors associated with EHS for acute stroke, there are important limitations to consider. First, the telephone-based surveys were EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 71 administered several months after the patient’s stroke event, therefore, there is potential for recall bias. Additionally, information on the proximity of the ED to the patient residence was not available so it was not possible to determine if this was a factor associated with decreased use of EHS. Finally, there is the possibility of response bias. For example, it could be those survey respondents who were stable enough to participate in a telemedicine program, comprise of healthier, more able-bodied stroke survivors, and may not be representative of the wider stroke patient population. Similar to Govindarajan et al. (2013) and Malek et al. (2014), Tataris et al. (2014) sought to describe the national prevalence of EHS use for stroke. In the United States, Tataris et al. (2014) undertook a retrospective analysis of the National Hospital Ambulatory Medical Care Survey-ED dataset from 2003 to 2009 to examine EHS trends and identify patient factors that may contribute to utilization. Of the 1,324 stroke patients identified from the dataset, 50.3% (n=666) presented via EHS. There was no significant change in EHS usage for stroke over the six years. Factors independently associated with EHS use for stroke included older age (OR=1.21; 95% CI 1.12-1.31), Non-Hispanic black race (OR=1.72; 95% CI 1.162.29) compared to non-White Hispanic, and long-term care residence (OR=11.50; 95% CI 6.19-21.36) compared to a non-nursing home residence. This study similarly provides an interesting overview of patterns of EHS use however with some limitations. An important limitation of this work is that it uses survey weighting to estimate the national probability and may not be truly representative of the wider population. Other limitations of this work included only assessing patients who received the REACH consult as opposed to those who arrived at an ED and were not provided REACH services. Further, the REACH program was EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 72 not offered to those residing in long-term care facilities, therefore, respondents may disproportionately represent a healthier subset of the stroke populations. Then in 2016, Yin and colleagues conducted a cross-sectional study to investigate EHS utilization and its associated factors in patients with acute ischemic stroke in China. Data were collected on 2,096 patients admitted for acute ischemic stroke from 66 hospitals in the Hubei province of China. Of the 2,096 patients, only 15.4% (n=323) arrived by EHS. Those patients who previously used EHS (OR=9.8; 95% CI 7.0-13.8), whose NIHSS score was ≥10 (OR=3.7; 95% CI 2.6-5.2), who lived in urban communities (OR=2.5; 95% CI 1.83.5), who had a sudden onset of symptoms (OR=2.4; 95% CI 1.3-4.2), who experienced their first stroke (OR=1.8; 95% CI 1.4-2.5), and who recognized initial symptom as stroke (OR=1.4; 95% CI 1.0-1.8) were more likely to use EHS. Additionally, when acute ischemic patients’ stroke symptoms were noticed first by others (OR=2.1; 95% CI 1.5-2.7), rather than by patients themselves, EHS was more likely to be used. While this study provides important information on trends of EHS use among patients with acute ischemic stroke, it was limited to a single study site, therefore, its generalizability is limited. Finally, in 2020, Ungerer and colleagues undertook a prospective survey of 459 patients with stroke admitted to an urban comprehensive stroke centre or a rural primary care centre in southwest Germany from January to June of 2017. Binary logistical regression was used to identify predictors of timely presentation, defined as within 4.5 hours of symptom onset, to hospital and predictors and patient characteristics were compared between urban and rural stroke centres. A total of 74.7% (n=343) patients were treated in urban centres, while 25.3% (n=116) were treated rurally. Both rural and urban patients were found to have similar levels of stroke knowledge and awareness about seeking medical attention however, EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 73 rural patients were less likely to contact EHS and experienced more hesitation when seeking help. Predictors of timely presentation included having a friend or family member with previous stroke (OR=2.43; 95% CI 1.15-5.15, p=0.021), having an awareness of the time window for treatment (OR=4.6; 95% CI 1.67-12.69, p=0.003), using EHS versus selftransport (OR=0.25; 95% CI 0.09-0.71, p=0.009), using EHS versus seeing a family physician (OR=0.22; 95% CI 0.08-0.57, p=0.02). While this study provides important information on trends of EHS use among urban and rural patients with stroke, it was limited to a single study site, therefore, the generalizability of findings is limited. Overall, the evidence in studies exploring determinants for EHS use in stroke was varied. However, patient age (Adeoye et al., 2009; Ekundayo et al., 2013; Govindarajan et al., 2013; Tataris et al., 2014) and a higher NIHSS score (Chen et al., 2013; Kuster et al., 2013; Malek et al., 2014), were some factors that were independently associated with greater EHS use across many of the studies captured in this review. There was mixed evidence on other factors, including patient sex, ethnicity, insurance status, or rural or urban residence. While the literature reviewed explores the association of EHS use with a range of characteristics, methodological differences, differences in the study setting, and variability in the determinants explored made it challenging to identify a core set of determinants associated with greater EHS use for stroke. Quantitative, retrospective Adeoye et al. (2009) United States Govindarajan et al. (2013) United States Ekundayo et al. (2013) Taiwan Quantitative, retrospective chart review Quantitative, retrospective review Quantitative, prospective Chen et al. (2013) England Qualitative, semistructured interviews Mackintosh et al. (2012) United States Study design Study Determinants associated with greater EHS use Older age Worsening pre-stroke disability Higher stroke severity Hemorrhagic stroke Stroke not at home Stroke recognized by someone other than the patient Stroke knowledge and awareness including F.A.S.T. Higher level of education Higher NIHSS score Altered consciousness Having atrial fibrillation Having large vessel stroke for those with ischemic stroke Being older Being female Having Medicare or Medicaid Higher NIHSS score Living in Southern and Western US Older age Having Medicare Sample n=3,008 n=19 stroke survivors n=26 witnesses n=1,344 n=204,591 n=566 Determinants of Emergency Health Service Use for Stroke (n=10) Table 2 Living in Northeastern or Midwest US Private or self-insurance Belonging to a minority group Living in a rural area Previous stroke knowledge Denial of symptoms Not perceiving symptoms as serious x Determinants associated with less EHS use EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 74 Sex Race Urban or rural residence x x x x Determinants with no association for EHS use Quantitative, prospective survey Ungerer et al. (2020) Germany China Quantitative, crosssectional Quantitative, retrospective chart review Quantitative, survey Quantitative, prospective Yin et al. (2016) United States Tataris et al. (2014) United States Malek et al. (2014) Brazil Kuster et al. (2013) Higher NIHSS score Having atrial fibrillation Having lower blood pressure at admission Higher NIHSS score Having self-insurance or Medicaid or Medicare Perceiving symptoms as serious Being African American Older age Being non-Hispanic Being African American Long term care residence Higher NIHSS score Living in an urban area Sudden onset of symptoms Recognized symptoms as stroke Stroke recognized by someone other than the patient Having friends/family with previous stroke n=165 n=197 n=1,324 n=2,096 n=459 x Rural residence x x Being Caucasian EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 75 Social status x x x x EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 76 Factors Influencing Presentation Delay Time plays a critical role in the management of acute stroke and seeking early and rapid medical attention is essential to receiving life-saving stroke treatments and limiting brain injury. However, we know that there is still a sizeable amount of time lost before patients make it to the hospital (Evenson et al., 2001) and a large part of this can be attributed to late patient presentation. Presentation delay, sometimes interchangeably referred to as prehospital delay, can be defined as the time lag between symptom onset and an individual’s arrival at the ED (Teuschl & Brainin, 2010). It has been found to range anywhere from three hours to upwards of 16 hours among those with stroke (Zerwic et al., 2007). When examining the literature relating to EHS use following a stroke, presentation delay emerged as a central concept. A total of ten studies that examined the association of different determinants with presentation delay were captured in this review, of these three were qualitative (Kitko et al., 2008; Moloczij et al., 2008; Zerwic et al., 2007) and seven were quantitative (Chen et al., 2007; Ekundayo et al., 2013; Faiz et al., 2013; Geffner et al., 2012; Memis et al., 2008; Seremwe et al., 2017; Ungerer et al., 2020). These are summarized in Table 3 at the end of this section. Analysis of the literature revealed that many diverse factors impact a person's decision to seek care and present to the ED. Factors influencing this presentation delay included sociodemographic characteristics (e.g., sex, age) (Chen et al., 2007; Ekundayo et al., 2013; Faiz et al., 2013), as well as other factors such as awareness and knowledge of stroke symptoms (Faiz et al., 2013; Kitko et al., 2008), decision-making following a stroke, including the influence of bystanders and prior contact with primary care professionals (Yin et al., 2016), as well as resource-related factors (e.g., finances and the perceived availability EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 77 of transport options) (Memis et al., 2008; Seremwe et al., 2017). While some of these factors were associated with a decrease in presentation delay, others, including contacting a primary care provider instead of seeking emergency medical attention, were found to increase presentation time. Each of these is discussed below. Awareness and Knowledge of Stroke Symptoms. Increasing awareness and knowledge of stroke has been the focus of many public health campaigns globally since poor knowledge of stroke symptoms has been associated with greater presentation delay and poor outcomes (Mellon et al., 2014). In this review of the literature, four studies examined the importance of stroke awareness and knowledge as it relates to EHS use and presentation delay (Chen et al., 2007; Zerwic et al., 2007; Faiz et al., 2013; Kitko et al., 2008). First, Chen et al. (2007) undertook a hospital-based prospective observational study to identify how much time could be eliminated between ED presentation and the initiation of clinical investigations as well as exploring factors influencing early ED admission among patients with acute stroke. Consecutive patients presenting to the ED with recent-onset (within four hours) of signs or symptoms of acute ischemic stroke were enrolled. Participants were recruited from a metropolitan hospital in southern Taiwan from June 2004 through to October 2005. Stroke diagnosis was confirmed by neurological examination and CT imaging and a total of 129 patients were included. Of these, 104 were found to have an ischemic stroke and 25 had a transient ischemic attack. The study population was 58.9% male, with a mean age of 67.0 years (+11.87), of which 53.5% reported having at least a high school education and 24.0% poor health literacy. A history of cerebrovascular or cardiovascular events was reported in 36.4% of patients and the mean NIHSS score upon admission was 8.44 (+7.99) EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 78 indicating moderate stroke. The most commonly reported symptom was limb weakness, documented in 85.3% of patients. Among stroke risk factors, 69.8% of patients had hypertension, 33.3% diabetes mellitus, and 26.4% had hyperlipidemia. Chen et al. (2007) found that only 29.5% of patients were transported to the ED by EHS. Univariate and multiple logistic regression analyses revealed that being less than the age of 65 (OR=4.31, p=0.03), having low health literacy (self-reported), including poor stroke knowledge (OR=16.5, p=0.01), and awakening with stroke symptoms (OR=36.6, p<0.0001) was associated with significantly greater presentation delay. While this study begins to establish some of the key factors influencing presentation delay and EHS use, the study had a relatively small sample size, was limited to a single metropolitan hospital, and did not collect data on important sociodemographic characteristics, including ethnicity, or patient-reported reasons for presentation delay. Despite these limitations, this study highlights core factors such as patient literacy and awareness of stroke symptoms and presentation that may be associated with presentation delay. Similar to Chen et al. (2007), Zerwic et al. (2007) identified that a lack of stroke knowledge can contribute to presentation delay. In their retrospective exploratory study, Zerwic and colleagues (2007) undertook structured interviews with 38 patients (aged 33-84, male n=12) following ischemic stroke to examine the knowledge of stroke and the presence of risk factors and their impact on time to ED presentation. Structured interviews were undertaken with patients to identify knowledge about symptoms and causes of stroke and the sequence of events from recognizing symptoms to accessing the ED. The study sample included patients of diverse ethnic backgrounds: 44.7% of the sample was African-American, 39.5% non-Hispanic white, and 15.8% were Latino. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 79 Analysis of the data revealed that only 60.5% of patients accurately identified at least one risk factor for stroke, while 55.3% of the overall sample were able to name at least one symptom. Presentation delay was a median of 16 hours, with only 31.6% of patients accessing the ED within two hours of symptom onset. The most commonly reported symptom was extremity weakness, experienced by 60.0% of the sample. Analysis of the interview data also found that longer presentation delays were found among participants who identified as African-American or Latino, as well as among patients who reported that they did not recognize the seriousness of their symptoms, experienced primary symptoms that were non-motor, did not use EHS, and resided in an urban setting. This study highlights the complex and diverse factors related to presentation delay, including poor stroke knowledge, ethnic differences, place of residence, and symptoms. Study limitations include small sample size, the inclusion of only English-speaking participants, and the use of a retrospective design that relied heavily on accurate patient recall. Thus, while this study may not be generalizable to the wider patient population, it does provide important insights into factors impacting patient decision-making and the use of EHS for stroke. Like Zerwic et al., Faiz et al. (2013) also sought to explore the impact of knowledge on presentation delay for stroke. Using a prospective study design, Faiz and colleagues (2013) identified factors related to decision delay and calling EHS as the first point of medical contact. They specifically sought to assess whether previous stroke knowledge influenced decision delay, prehospital delay, and EHS use. Data were collected on 350 patients (69.9 years, +12.9, and 58.0% were male) upon discharge from a stroke unit at the Akershus University Hospital stroke unit in Norway. Of the 350 patients, 64.3% had a diagnosis of acute ischemic stroke, 8.6% of intracerebral hemorrhagic stroke, and 27.1% of EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 80 transient ischemic attack. The median decision delay was found to be two hours, which accounted for 62.3% of the presentation delay. Interestingly, in contrast to other studies, previous stroke knowledge was not found to reduce decision delay or increase the use of EHS. Instead, a higher NIHSS score (p<0.001), transport by EHS (p<0.001), and younger age (p=0.048) were significantly associated with earlier patient presentation. In addition to data exploring symptom knowledge, the perceived seriousness of symptoms also emerged as an important factor in presentation delay and EHS use. For example, Kitko et al. (2008) undertook a qualitative study informed by grounded theory methods to describe factors influencing the decision-making process of seeking treatment for acute stroke symptoms. Researchers were specifically concerned with exploring the following research questions: 1) Who, if anyone, helped influence the patient’s decision to seek care; 2) How did initial symptoms influence the patient’s decision to seek care? and 3) What other factors influenced the patient seeking care? Purposive sampling was used to recruit ten participants (65.6 years +13.0) and 60.0% were male) with a diagnosis of acute ischemic stroke from a small community hospital if they had an NIHSS score between five and 22. If a caregiver was involved in the decision-making process of seeking care and the patient was unable to participate, caregivers were also interviewed. Semi-structured interviews, lasting anywhere from 20 to 30 minutes in duration, were undertaken as follows: five with patients, three with caregivers, and two with both the patient and the caregiver. Two main themes emerged from the analysis of the data. These included the severity of symptoms and past experiences. The patient’s perception of symptoms was related to presentation time. In general, patients who perceived their symptoms as more severe or serious had a greater sense of urgency to go to the hospital. Past experiences also EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 81 appeared to influence the decision to seek care. For example, late patient presentation was associated with five subthemes, including a lack of stroke knowledge, fear of hospitals, denial, living alone or nocturnal symptom onset, and pre-existing health concerns. Conversely, early patient presentation was associated with having a previous history of stroke or knowledge of stroke symptoms. While this study provides important contextual information related to patient decision-making and the process of seeking care, several important limitations should be considered. While the small sample size may be considered small, the authors note that saturation was reached. Further, the recruitment of a larger and more diverse sample (e.g., different ethnicities, patients residing from varying distances to the hospital) may have yielded other important insights that are commonly overlooked in contemporary literature. Second, issues like patient fear or denial may not be accurately captured or missed entirely with the inclusion of caregivers. For example, caregivers may not be able to bring forth these issues as completely from a patient’s perspective due to not having experienced the feelings first-hand. However, the inclusion of caregivers does allow for a more fulsome examination of the decision-making around EHS which could be particularly useful at times where patients themselves may be impacted by stroke symptoms or have their recollection of events impacted following stroke. Decision-making Following Stroke. Decision-making, including recognizing symptoms, deciding whether or not to seek emergency medical care, and calling for EHS following the onset of stroke symptoms can be a complex process. In this review of the literature, this decision-making process was found to be impacted by several factors including resource-related factors such as awareness of stroke symptoms, patient finances, EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 82 and the availability of transport options. In this review, two studies that examined decisionmaking following stroke were found (Geffner et al., 2012; Moloczij et al., 2008). First, Moloczij et al. (2008) undertook a qualitative study to explore patient perspectives on factors that influenced the decision to seek help at the time of the stroke. Open-ended interviews were undertaken with 20 participants from five settings in New Zealand, including three hospitals, a community-based stroke support service centre, and a primary healthcare centre. Grounded theory methodology informed both the data collection and the analysis. Analysis of interview data resulted in the emergence of four main themes, including making sense of symptoms, maintaining a sense of normality, presence, and influence of another person, and perception of medical services. In this study, participants appeared to go through a process of recognition, interpretation, and negotiation in their course of decisionmaking during a stroke. In general, the more time that was spent on each step of this process, the longer the presentation delay appeared to be. The authors concluded that two main factors impacted the decision-making process following stroke. These factors included the tendency of people to prioritize everyday commitments and responsibilities over their health and wellbeing and variation in thresholds different people have for when they perceive themselves to be sick enough to seek medical help. Interestingly, they also found that sometimes the presence of a bystander promoted faster use of EHS, while other times, the presence of another person decreased the likelihood of calling EHS and contributed to greater presentation delays. This study provides important insight into the patient perspectives for seeking medical help in the event of an acute stroke. It also sheds light on the potential role and EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 83 impact of bystanders on the decision-making process. However, as this work was limited to an urban population from New Zealand, it may have limited applicability to other populations, including those residing in smaller urban, rural, or remote regions. Similar to Moloczij and colleagues (2008), Geffner et al. (2012) undertook a prospective study to examine the decision-making process following the onset of symptoms of acute stroke. They specifically investigated who (in the event of a stroke) decides to seek medical help, where they go, and how long it takes to contact the health system and to arrive at the ED. Patients who were admitted for acute stroke or transient ischemic attack to an established neurology unit of a hospital in eastern Spain were eligible to participate. A consecutive sample of 382 patients was recruited (71.6 years +12.6) representing 388 stroke cases and a mean NIHSS score of 7.8. Of these, there were 37 cases of intracerebral hemorrhagic stroke, 70 transient ischemic attacks, and 281 ischemic strokes. Analysis of the study data revealed that presentation delay ranged from one hour and 39 minutes to 16 hours and 11 minutes, with only 39.2% of patients arrived at the ED in less than three hours. Moreover, the decision to seek medical attention was taken by patients in only 20.4% of cases. Presentation delay was decreased in cases where the event was considered serious by patients, stroke was recognized, the first point of medical contact was not primary care, a transient ischemic attack occurred, and the onset of symptoms occurred away from home. In this study, age, sex, and previous history of stroke were not found to be associated with decreased presentation delay or earlier ED arrival which conflicts with previous studies captured in this review (Chen et al., 2007; Faiz et al., 2013). This study has some important limitations, including being undertaken at a single hospital and excluding EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 84 severe cerebral hemorrhages. Despite these limitations, it provides important insight into the behaviour of stroke patients and their decision to seek medical attention for stroke. Resource-related Factors. Factors related to resources, including finances and the availability of transport options, have been explored for their role in contributing to presentation delay for stroke. In this review, two studies relating to resource factors were found to impact presentation delay and the use of EHS were appraised and are outlined below (Memis et al., 2008; Seremwe et al., 2017). First, a study by Memis et al. (2008) was undertaken using a descriptive design to assess the level of pre-hospital delay and reasons for such delay in patients with acute stroke. As part of this, they accounted for factors such as socioeconomic status and availability of transport options at the onset of symptoms. Data were collected from the ED and neurology intensive care unit of two main government hospitals in Western Turkey. Following a chart review, an in-person semi-structured questionnaire was administered to patients, their relatives, and physicians responsible for providing care to patient participants. Complete data were available for 98 patients (67.7 years, +11.0, of which 45.9% were male). When examining presentation delay, 68.4% of patients were found to arrive within three hours of symptom onset while the remaining 31.4% arrived outside the three-hour window. Overall, this study found a higher rate of patients arriving within the three-hour window than those outside that time frame; a finding in contrast to much of the existing literature on presentation delay for acute stroke (Adeoye et al., 2014; Caplan et al., 2016; Moser et al., 2007). While the authors were not able to provide a clear reason for this difference, they attempted to provide a possible explanation. The authors hypothesized that the study setting may have been responsible for the higher proportion of patients presenting within three hours EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 85 of symptom onset. For example, this study was undertaken in a very affluent city in Turkey, so the authors theorize that patients may have had more knowledge or awareness of stroke and means to support the improved access to medical services as compared to those that may have less available resources or belong to more disadvantaged socioeconomic backgrounds. Finally, Seremwe et al. (2017) undertook a descriptive cross-sectional study at two teaching hospitals in Zimbabwe, Africa to determine the factors associated with the time taken to present to the hospital after the onset of acute stroke symptoms. Data were collected from 121 stroke survivors and their relatives using a self-administered questionnaire that asked for information on the history of the stroke and the time taken to present to the hospital. Analysis of the study data demonstrated that only 33.0% of patients were able to accurately recognize symptoms of a stroke. When considering factors contributing to presentation delay, not having the financial means to pay for hospital expenses was a significant predictor of late presentation (OR=6.64; 95% CI 2.05-21.53, p=0.0002). Other factors related to greater presentation delay, although not found to be statistically significant, included not perceiving stroke symptoms as serious and the unavailability of transport options. Despite offering important insights into the different factors associated with presentation delay in cases of acute stroke, this study has some limitations that must be considered. First, this was a descriptive cross-sectional study which limits its generalizability. Second, data collection involved a self-administered questionnaire that relied heavily on patient recall and accurate reporting, therefore, there is potential for recall bias in the results obtained. However, it signaled the need to consider what resources were available to patients and their caregivers during situations of stroke. United States Geffner et al. (2012) Norway Faiz et al. (2013) United States Ekundayo et al. (2013) Quantitative, prospective Quantitative, retrospective Quantitative, retrospective Quantitative, retrospective Chen et al. (2007) Taiwan Study design Study x n=204,951 n=388 x x Being less than 65 years old Low health literacy Poor stroke knowledge Awakening with stroke symptoms n=129 n=350 Factors found to increase presentation delay Sample Factors Influencing Presentation Delay for Stroke (n=9) Table 3 Perceiving symptoms as serious Recognizing stroke First point of contact not primary care Having a transient ischemic attack Onset of symptoms not at home High NIHSS score Transport by EHS Younger age High NIHSS score Transport by EHS x Factors found to decrease presentation delay EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 86 Age Sex Previous history of stroke Previous stroke knowledge x x Factors with no effect on presentation delay Qualitative, interviews Moloczij et al. (2008) Qualitative, descriptive Zerwic et al. (2007) United States Africa Quantitative, descriptive crosssectional Seremwe et al. (2017) New Zealand Turkey Multimethod, retrospective chart review, interview Qualitative, grounded theory interviews Memis et al. (2008) United States Kitko et al. (2008) Prioritizing everyday commitments over health Not feeling sick enough/higher threshold for illness Lower socioeconomic status Not perceiving symptoms as serious Unavailability of transport options Poor stroke knowledge Being African American or Latino Not recognizing the seriousness of symptoms Primary symptoms non-motor Did not use EHS Live in an urban area n=121 n=38 Poor stroke knowledge Fear of hospitals Denial of symptoms Living alone Awakening with symptoms Pre-existing health concerns x n=20 n=98 n=10 x Lower socioeconomic status Perceiving symptoms as serious Higher socioeconomic status Greater stroke awareness Perceiving symptoms as serious EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 87 x x Presence of bystander x x EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 88 Key Findings and Gaps in the Existing Literature Stroke presents a serious public health challenge with enormous costs, fiscal, physical, and psychological. With the incidence of stroke only projected to increase sharply in the coming decades due to population aging and rising levels of chronic disease (Santulli, 2013) this challenge will continue to persist. As such, developing a more complete understanding of stroke, including the impact and role of EHS in the stroke care pathway and the decision-making process of seeking emergency medical attention among stroke survivors is essential to developing responsive healthcare practices. This integrative review aimed to answer the two-part question, “How does the mode of transportation to the emergency department impact the receipt of medical care in the emergency department?” and “What is known about what influences the decision to seek emergency health services for acute stroke?” As such, factors associated with the use of EHS for acute stroke, as well as the impact of mode of transportation to the ED and decisionmaking has on emergency medical care for stroke received in the hospital were examined. Using an integrative approach, a comprehensive review of the contemporary literature led to the selection of 25 core studies that were undertaken in various parts of the world representing different healthcare systems. Critical appraisal and synthesis of the captured studies revealed that there is a shortage of recent evidence in the literature around determinants and factors of EHS use among populations with stroke, which warrants further investigation. Furthermore, methodological differences, including variations in study design and settings meant that it was challenging to identify a core set of determinants associated with EHS use and decreased presentation delay or factors related to EHS use for stroke. While it was not possible to specifically determine whether EHS use alone, as opposed to prenotification by EHS providers, was associated with fewer delays in receiving EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 89 emergency stroke care, the evidence reviewed does lend strong support for the practice of hospital prenotification. More specifically, prenotification was associated with fewer delays, including faster physician assessment (Hsieh et al., 2016, Mosley et al., 2007), quicker neuroimaging, including interpretation, and a higher rate of administration for thrombolytic therapy (Abdullah et al., 2008; Bae et al., 2010; Quain et al., 2008; Patel et al., 2011; Lin et al., 2012; Hsieh et al., 2015; McKinney et al., 2013; Mosley et al., 2007). Many determinants were explored for their role in predicting EHS use. These included factors such as age, sex, stroke severity, socioeconomic status, race, and rural/urban residence. However, inconsistencies in the impact of these findings were identified, making it challenging to identify a core set of determinants. For example, while older age was associated with greater EHS use in some studies (Adeoye et al., 2009; Ekundayo et al., 2013; Govindarajan et al., 2013; Tataris et al., 2014), a smaller number of studies found age was not a factor in EHS use (Kuster et al., 2013; Malek et al., 2014). Some studies found that sex was not associated with EHS use (Adeoye et al., 2009; Govindarajan et al., 2013), while others found females were more likely to use EHS (Ekundayo et al., 2013). Overall, a greater stroke severity, measured by a higher NIHSS score, was associated with greater EHS use (Adeoye et al., 2009; Ekundayo et al., 2013; Kleindorfer et al., 2010; Kuster et al., 2013; Malek et al., 2014). However, it was not certain whether this increase in EHS use in cases of strokes of higher severity was explained by having individuals other than the patient deciding to call for help in such instances. Most studies were single-centre and were undertaken in large, urban centres and there was a paucity of data examining rural location and EHS use, highlighting a gap in the knowledge base. However, one study that examined the role of location of residence as a EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 90 factor in EHS use, found that neither rural nor urban residence was associated with use (Govindarajan et al., 2013) while another study examining the same found those living in rural areas were less likely to use EHS (Ungerer et al., 2020). While ethnicity and race were not frequently examined, in studies that did explore the impact of these factors, the findings were mixed. For example, one study found minorities were more likely than Caucasians to call for EHS (Malek et al., 2014), while another found the opposite (Ekundayo et al., 2013). Finally, one study found having insurance was associated with greater EHS use (Ekundayo et al., 2013) while another found the opposite (Govindarajan et al., 2013). Finally, several factors were found to impact presentation delay. These included sociodemographic factors, such as age and sex, as well as individual-level factors. Individual-level factors included stroke knowledge and awareness of stroke symptoms, the role of bystanders, and prior contact with primary care as well as resource factors, including socioeconomic status and perceived availability of transport options. Similar to the findings on determinants of EHS use, the findings on factors related to presentation delay in stroke were also mixed and inconsistent making it challenging to draw conclusions from the data. For example, findings from the studies captured in this review revealed that while in one study greater age was associated with less presentation delay (Chen et al., 2007) in another study younger age was associated with less presentation delay (Faiz et al., 2013). Analysis of the review findings also suggests that there are certain stroke symptom characteristics that are associated with differences in presentation delay. For instance, nonmotor symptoms were associated with greater presentation delay (Zerwic et al., 2007) while in another the sudden onset of symptoms led to less delay (Yin et al., 2016), and still, in others, the perception of emergency surrounding symptoms was associated with less delay EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 91 (Kitko et al., 2008; Malek et al., 2014). Additionally, awakening with stroke symptoms was associated with significantly greater presentation delay (Chen et al., 2007). Poor stroke knowledge was associated with greater presentation delay in some studies (Chen et al., 2007; Zerwic et al., 2007), while in contrast, other studies found that having a previous history of stroke or stroke knowledge was associated with less presentation delay (Kitko et al., 2008; Ungerer et al., 2020). Still, others found that having stroke knowledge did not decrease presentation delay (Faiz et al., 2013). Greater educational attainment was found to be associated with decreased presentation delay (Chen et al., 2015). This may be theoretically due to the indirect effects of higher education and a greater understanding and awareness of symptoms. For example, public health and awareness campaigns can often be targeted to workplace settings. In general, the evidence surrounding stroke awareness and knowledge is inconclusive. However, some interesting factors emerged. For example, having previous knowledge or awareness of stroke was not associated with reduced presentation delay or greater use of EHS. This highlights an opportunity for targeted stroke education to move beyond focusing on the highest risk individuals to a wider population. For example, individuals experiencing stroke symptoms may not be able to call for help or may have someone else make this decision similar to what was found by Yin et al. (2016). In such instances, the decision to call for EHS help may be taken by others. Therefore, it is imperative that stroke knowledge and awareness be expanded beyond those at risk to include caregivers and the general public. A summary of potential reactions to symptoms of acute stroke, based on the literature examined in this review is provided in Figure 5. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 92 Figure 5 Possible Responses to Symptoms of Acute Stroke EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 93 Several important gaps were identified in the reviewed literature. First, critical appraisal and synthesis of the captured studies revealed that there is a shortage of literature over the last decade around determinants and factors of EHS use among populations with stroke, which warrants further investigation. This is especially important given the recent advances in EHS roles, including the greater implementation of advanced practice paramedics within community settings and EHS roles (BCEHS, 2018). Furthermore, methodological differences, including study design, definitions of prehospital delay, and variations in study settings meant that it was not possible to identify a core set of determinants associated with EHS use and decreased presentation delay or factors related to EHS use for stroke. Second, most studies were undertaken using large national datasets, and no studies specifically examining the use of EHS in northern, rural, or remote populations were captured in this review. As these populations face unique healthcare challenges, including inclement weather and vast geography, the experience and use of EHS in these populations are likely to be different. Third, while there was an array of international studies reviewed, there was not much captured in a Canadian context, which could yield additional insights. Additionally, each of the studies reviewed were either qualitative or quantitative. For example, while the quantitative studies provided important information on trends and outcomes, there was no insight into the reasons influencing these trends. Conversely, while qualitative studies provided important insight into factors influencing the use of EHS, there was no information on trends or outcomes associated with these factors. As such, the use of multi-method or mixed methods to address EHS in stroke may yield more complete insights. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 94 Limitations While this review has provided some informative data that can help determine potential factors that may impact EHS use, there are some important limitations to consider. First, while an integrative review can provide a highly descriptive account of the available literature, it does not explicitly assess methodological quality as is possible in more traditional forms of review (Whittemore & Knafl, 2005) such as a systematic review. However, while systematic reviews are typically more focused, they may not allow for the exploration of methodologically diverse data (Whittemore & Knafl, 2005). The strength of this integrative review lies in the breadth of literature covered which provides a deeper understanding of the issue of interest and was better suited to the goals of this research. Second, while relevant literature was chosen with close and careful consideration, it is possible that some pertinent literature was not captured. Despite attempts to generate a comprehensive and robust review, including ensuring that a health sciences librarian supported the conceptualization, development, refinement, and evaluation of the search strategy, it is possible that other relevant sources were not captured. To mitigate this, repeated review searches, searching in Google Scholar for related papers, and hand searches using existing reference lists of key papers were undertaken to ensure a more complete search. Summary Considering the importance of accurate stroke recognition by patients, their caregivers, and the general public and the influence of this on patient outcomes, there is a need for further and targeted research around how to maximize the identification of stroke and recommended course of action (i.e., seeking emergency medical attention) among this population. Further, the evidence surrounding prenotification to receiving facilities is EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 95 promising in reducing time to treatment further highlighting the importance of greater research in this area. Given the important role that EHS can play in the stroke care pathway, further research may yield insights behind factors that impact EHS use and is warranted. This doctoral work aims to bridge this gap and explore provincial and regional factors that impact EHS use. Having a more complete understanding of factors that impact EHS use among patients with stroke will not only provide data to inform health system improvements but will also provide examples of how to bolster and refine the public response to symptoms of acute stroke to improve outcomes, including reduced death and disability. This research directly addresses this by examining EHS use in northern BC, particularly in underserved and rural areas of BC. The next chapter, Chapter Three, presents the methods and methodology for this dissertation. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 96 Chapter Three: Methodology and Methods In this chapter, the methodological approaches and methods for this study are presented. This includes an overview of the context and rationale, the theoretical orientation of the research, and a presentation of the multi-method research approaches adopted. Context As described in the first chapter, rural, remote, and northern dwelling populations have been identified as being particularly vulnerable to the effects of stroke (Pearson, 1998). Functional outcomes and prognosis are known to be worse for individuals with stroke living in rural, remote, and northern regions (Fleet et al., 2013). This was demonstrated in a province-wide study conducted in Alberta, Canada which found that stroke-related disability and mortality are higher among patients treated in rural EDs than those treated in EDs located in urban centres (Yiannakoulias et al., 2004). These rural-urban disparities in morbidity and mortality are thought to be due to a multitude of factors, some of which include poorer population health and more limited access to specialized healthcare services for populations residing in rural, remote, and northern areas (Pearson, 1998). Further complicating the delivery of health services in these settings are the challenges around the implementation of clinical practice guidelines. Guidelines are often urban-centric and often do not translate well into rural areas (Biovin et al., 2008; Fevers et al., 2011; Joubert et al., 2008; Pearson, 1998). The delivery of healthcare services in these regions is uniquely impacted by challenging geographies and other population factors, including long distances, difficult terrains, poorer overall population health status, and persistent chronic human and healthcare resource shortages (Brainin et al., 2007; Harrison et al., 2010). While the use of telehealth has been touted as an alternative to alleviate accessibility challenges around management and follow-up for chronic conditions in rural EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 97 settings, its use for acute conditions, including stroke remains sub-optimal (Jones et al., 2014). This research will specifically focus on northern and rural BC, a traditionally underserved and underserviced region of BC. Exactly what constitutes ‘rural’ remains highly contested (Kulig & Williams, 2011). For example, there has been much debate regarding the concept of rural and remote and whether it should be defined using a geographical lens (Bollman & Clemenson, 2008; Dandy & Bollman, 2008) or whether it is more of a social concept and reminiscent of a particular lifestyle (Badenhorst et al., 2014; DesMeules et al., 2012). As there is currently no universally accepted definition of rural or remote in Canada, it is important to clarify definitions before providing further context for this work. For this research, a geographical lens was used to define ‘rural’ through the definitions used by the BC Ministry of Health (BC Ministry of Health, 2016). The BC Ministry of Health characterizes BC’s 61 geographic service areas according to population size and geographical considerations. Geographic service areas are categorized as metro (190,000+ people), urban/rural (40,001-190,000 people), rural (10,001-40,000 people), or remote (0-10,000 people) (BC Ministry of Health, 2016). Throughout this dissertation, there is reference to the ‘north’ or ‘northern’ regions. Northern regions are typically defined both politically and geographically. Politically, northern Canada includes the Yukon, Northwest Territories, and Nunavut, representing 40% of Canada’s total landmass (Government of Canada, 2017). Colloquially speaking, ‘northern’ is often used to describe provincial north or areas that are at a considerable distance to or ‘north of large metropolitan cities’. Any general reference to north or northern in this dissertation will reflect the use of both the Statistics Canada definition and the use of the word in relative or EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 98 colloquial terms. For this work, the focus is on the provincial north of BC which is described in further detail under the setting section. Setting The Northern Health region spans an area of 600,000 km or roughly two-thirds of BC (BC Ministry of Health, 2016). It currently serves a population of over 350,000 residents, approximately 7% of the total provincial population (Northern Health Community Health Information Portal (NH CHIP), 2016). Due to the vast geography and population dispersion patterns present in this region, the delivery of healthcare services and supports remains challenging. An added layer to the complexity of health service delivery is the poorer health status of northern British Columbians as compared to the general population of BC. For example, after adjusting for age, Northern Health has the highest prevalence and incidence of chronic conditions, including hypertension and cardiovascular diseases (Provincial Health Services Authority, ND). Figures 6. and 7. provide a visual representation of the geography of the Northern Health region and its health service delivery areas (HSDAs) within the context of the other regional health authorities. Following this, Table 1. provides a breakdown of the geographic size and populations served by each of the regional health authorities and their respective HSDAs (BC Ministry of Health, 2016). EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 99 Figure 6 Regional Health Authorities in British Columbia (used as per the Open Government LicenceBritish Columbia from https://www2.gov.bc.ca/gov/content/data/geographic-dataservices/land-use/administrative-boundaries/health-boundaries) EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 100 Figure 7 Health Service Delivery Areas in British Columbia (used as per the Open Government Licence-British Columbia from https://www2.gov.bc.ca/gov/content/data/geographic-dataservices/land-use/administrative-boundaries/health-boundaries) East Kootenay (11) Kootenay Boundary (12) Okanagan (13) Thompson Cariboo Shuswap (14) Fraser East (21) Fraser North (22) Fraser South (23) Richmond (31) Vancouver (32) North Shore/Coast Garibaldi (33) South Vancouver Island (41) Central Vancouver Island (42) North Vancouver Island (43) Northwest (51) Northern Interior (52) Northeast (53) Interior Health Fraser Health Vancouver Coastal Health Vancouver Island Health Northern Health Note: All population data from health authority webpages based on BC Statistics 2016. Note: All Fraser Health geographic size not available publicly, calculated manually. Health Service Delivery Area Health Authority 600,000 56,000 58,560 14,753 215,422 Size (sq. km) 300,000 800,132 1,192,792 1,829,828 762,124 Population Served by Health Authority Population Served and Geography Covered by Each Regional Health Authority in British Columbia Table 4 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 101 71,553 140,452 67,885 383,360 270,817 122,233 198,309 649,028 284,389 295,763 639,245 784,977 79,856 78,463 362,258 219,467 Population of HSDA EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 102 The burden of poor health is broadly distributed throughout the population of northern BC and is reflected across different indicators of health status (NH CHIP, 2016). Using mortality as an example, during the five years of 2007-2011, estimates based on national averages would predict 6,981 deaths in Northern Health. However, there were 8,910 deaths, or roughly 2,000 more deaths than expected (NH CHIP, 2016). This discrepancy in all-cause mortality was attributed to a greater disease burden, a higher level of unmet health needs, and elevated levels of health service utilization patterns for the population residing in this area. When considering stroke, there are an estimated 5,000 stroke hospitalizations a year in BC, representing a mortality rate of 13% (BC Stroke Collaborative, 2011). In Northern Health, during the 2014/2015 fiscal year, there were approximately 200 ischemic strokes and 80 transient ischemic attacks related to unique hospitalizations representing an average hospital stay of 23.7 days (NH CHIP 2016; Statistics Canada, 2013). The stroke-related mortality rate in this area was 18.1%, or 5.1% higher than the provincial average of 13.0% (NH CHIP, 2016; Statistics Canada, 2013). Data for stroke in this region are limited and the most recent provincial stroke report from 2012 did not include data from northern BC (BC Patient Safety & Quality Agency, 2014). In terms of healthcare services for stroke, the implementation of evidence-based best practices is challenging within the northern region of BC. For example, while best-practice guidelines underline the importance and effectiveness of dedicated stroke units for organized and efficient stroke care (Lindsay et al., 2017; Nicol & Thrift, 2005; Silverstrelli et al., 2006) there are no dedicated stroke units, or stroke neurologists present in Northern Health facilities, including the largest and only tertiary care facility in the area, the University EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 103 Hospital of Northern BC (UHNBC). Further, access to CT/MRI imaging is only available at seven of the 18 acute care facilities in the region. This includes CT imaging in the cities of Prince George, Quesnel, Terrace, Prince Rupert, Dawson Creek, and Fort St. John, while MRI is available in only Prince George and Quesnel. Since the initiation of this study, a seventh CT scanner was added to the community of Smithers, BC in January of 2019. However, this site was not included in this research due to the lack of data for the years of study. The centralization of healthcare services in BC and northern BC is in response to both the populations accessing services in these areas as well as population densities. While it may be true that rural communities cannot support the same level of medical facilities found in larger centres, residents in these smaller communities also lack access to the equivalent level of EHS compared to their urban-dwelling counterparts (Harris, 2017). This means that individuals who live in smaller urban, rural, and remote areas have fewer, if any, options when it comes to medical transportation, choice of facilities, or higher-level specialist care. This rural-urban divide continues in BC when it comes to patient transport. Currently, EHS providers with more advanced skillsets and training are largely concentrated in large urban centres where distances to specialized secondary and tertiary care are the shortest (Kornelsen et al., 2016). In contrast, rural areas generally are staffed with EHS providers with basic training who are furthest away from a higher level of care and often tasked with transporting patients across large distances (Kornelsen et al., 2016). Further complicating this issue of transport, EHS providers in urban centres are resourced full-time, whereas many rural EHS stations are attended to by ‘on-call’ personnel (Kornelsen et al., 2016). Policymakers have attempted to address the issue of paramedic recruitment, retention, and EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 104 staffing in rural BC, through initiatives such as the introduction of the Community Paramedicine program (BCEHS, 2018). However, contextual factors including vast geographies, difficult climates, centralization of services, and rural-urban divide in resource allocation, continue to create serious challenges to the safe, timely, and effective transport of patients to centres equipped to provide the level of care required in medical emergencies. This state of being chronically underserved contributes to denied or delayed care for rural residents. This is problematic in situations of high acuity medical emergencies such as stroke and could, in part, potentially explain the higher rates of stroke-related disability, morbidity, and mortality observed in rural residents (Fleet et al., 2013; Fleet et al., 2018). However, there is a need for further research to explore the transport patterns and practices of stroke survivors across BC and more specifically Northern Health, to better understand this complex health service issue. Purpose The purpose of this study was to investigate the use of EHS for acute stroke and focused on stroke outcomes in Northern Health. In Phase A of this study, a provincial overview of EHS use for stroke, as well as a breakdown by regional health authority and HSDAs was described. This included the Fraser Health Authority, the Vancouver Coastal Health Authority, the Interior Health Authority, the Northern Health Authority, and the Vancouver Island Health Authority. This provided a critical provincial context for the explorations of stroke-related EHS use and care in BC. In Phase B of this study, trends of EHS use on in-hospital emergency care within the Northern Health regions and by facilities with neuroimaging capability were determined. As previously alluded to, this region was of particular interest due to the lack of existing data for this region which is known for disparities in health outcomes, service allocation, and overall population health. Finally, in EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 105 Phase C of this study, the decision-making process of how patients and caregivers engaged in help-seeking behaviors, including the use of EHS in response to symptoms of acute stroke was explored. Rationale This study complements a larger ongoing effort to address hyperacute and acute stroke care in BC. This work is occurring in response to a need to prepare BC’s EHS system for the expected shift in population demographics and change in the demand for services in the future. Previous work was undertaken in 2015 in partnership with the Provincial Health Services Authority, Stroke Services BC, and Northern Health to examine the optimization and implementation of stroke prevention guidelines in northern BC, as well as assessing the needs of community members (Banner et al., 2017). It was through these discussions with key stakeholders around clinical guideline enactment and challenges for providing acute stroke care in rural and northern BC, including pre-hospital services, that a need to further explore stroke care in this region was identified as a strategic health system priority. Thus, this practice-driven project was designed to reflect the needs of the Provincial Health Services Authority and Northern Health and to complement other stroke initiatives. The overarching goal was to generate actionable findings that could be used to inform and optimize the delivery of stroke services within the Northern Health region. Patients who arrive at the hospital using EHS following stroke experience fewer delays in receiving appropriate diagnostic testing, including brain imaging, and are more likely to receive tPA if eligible (Canadian Best Practice Recommendations, 2018). Nationally, it is estimated that 67.0% of stroke patients arrive by EHS (Canadian Stroke Best Practices, 2018). While current targets for transport to the hospital by EHS providers have been assessed at 80.0% (Canadian Stroke 2009 benchmark data, Canadian Stroke Best EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 106 Practices, 2018). In BC, it is estimated that approximately 63.0% of patients with stroke arrive by EHS (CIHI, 2016). However, there is limited existing data to explain transport practices and EHS use following a stroke, representing an important knowledge gap. This is especially noteworthy in BC as the availability of hyperacute stroke care varies considerably across the province (see Tiers of Service in Appendix A), with the highest levels of care being restricted to the Lower Mainland and progressively more limited access in the Island, Interior, and Northern regions of the province. Overall, those experiencing stroke outside large urban centres have more restricted access to neuroimaging, thrombolysis, and EVT, and must be transported large distances to receive this care (Kapral et al., 2020). This is especially complicated as access to EHS transportation in some of the most geographically distanced regions of the province, which are home to some of the most vulnerable populations, remains limited. As such, the investigation into prehospital and emergency stroke care has been identified as a key strategic priority in the provincial stroke health services landscape. Finally, as discussed in the opening chapter, the ongoing Canadian clinical trial (FRONTIER) is testing the effectiveness of the neuroprotectant NA-1 (Buick & Drennan, 2016). A key component of the potential delivery of this agent is prehospital administration. Testing of NA-1 in early animal studies and small-scale human clinical trials has demonstrated an ability to significantly reduce infarct size when administered within three hours of stroke symptom onset (Buick & Drennan, 2016). As the administration of NA-1 must occur en route to the hospital, there are important implications for the delivery of patient care to be considered in the context of regions with more limited EHS services, such as northern BC. It is of utmost importance that more stroke patients make use of EHS to EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 107 receive timely and evidence-based stroke care. Early findings are promising and it is hoped that focusing on the development and integration of prehospital stroke care holds particular value for those in small urban, rural, and remote communities who must be transported large distances to receive stroke care and specialist services. Developing a more comprehensive understanding of the patterns for EHS use and related community-level perspectives and barriers may have important impacts on strokerelated mortality and disability. Provincial stakeholders in BC, have identified exploring the hyperacute stroke services as an important strategic opportunity to advance the care of persons with stroke (P. Ramsay, personal communication, June 27, 2016). Study Questions This exploratory and descriptive study specifically addresses the following research questions: 1. What are the similarities and differences in EHS use for stroke across the five regional health authorities of BC? 2. What are the similarities and differences (in neuroimaging completion, thrombolysis administration, and prescription of antithrombotic therapy) among individuals who arrive at the hospital via EHS as opposed to those who self-transport in northern BC? 3. What are the similarities and differences (in neuroimaging completion, thrombolysis administration, and prescription of antithrombotic therapy) among males and females including those who arrive at the hospital via EHS as opposed to those who selftransport in northern BC? 4. What are the predictors of stroke-related EHS use in northern BC? EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 108 5. What are the factors associated with stroke survivors (or their caregivers) in mobilizing the use of EHS for transport to a hospital in the event of an acute stroke in northern BC? Theoretical Orientation This multi-method study is informed by an integrated knowledge translation (IKT) approach (Bowen & Graham, 2013; Graham et al., 2006). Integrated knowledge translation is a collaborative model of research that seeks to engage stakeholders and knowledge users, including key decision-makers, healthcare providers, and patients as partners within the research (Graham et al., 2006; Kothari & Wathen, 2013). This approach to research requires researchers and knowledge users to work together throughout the research process to identify key priorities, develop research questions, and interpret findings to advance the application of research outcomes into practice (Banner et al., 2019; Graham et al., 2006). This method of engagement serves as a mechanism to promote a higher level of accountability, authenticity, transparency, and trust in the scientific process and facilitates a more democratic approach to knowledge production, in stark contrast to traditional academic ways of working that tend to be surrounded by privilege and elitism (Boote et al., 2011; Jagosh et al., 2015; 2011; Wynne et al., 2006). As Kothari et al. (2017) summarize, “this new way of working suggests that the synergies derived from the collaboration will result in better science; more relevant and actionable research findings; increased use of findings in policy or practice; and mutual learning.” Improvement in outcomes and health systems have been frequently cited as benefits by research teams adopting IKT approaches (Banner et al., 2019). Positive outcomes that have previously been reported include improving the relevance and quality of research, EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 109 increasing awareness and acceptance of research, and facilitating the use of research in policy and practice (van de Goor et al., 2017). Integrated knowledge translation has also been successfully employed in healthcare studies demonstrating positive benefits, including knowledge creation and mobilization. One such example is detailed by Kothari and colleagues (2017) where they explore the process and contributions of using IKT in longterm care research in Ontario. Project Development and Roles As previously stated, the demand for the work in this study stemmed from a recognized need to urgently optimize stroke-related outcomes for patients residing in rural, remote, and northern regions. Undertaking this work at the University of Northern BC was important due to the strong connections with the communities within which it sits. This intricate connection with the key stakeholder groups, along with robust community supports, allowed me to understand the geography and contextual aspects that are critical to this work. Consistent with an IKT approach, a multi-stakeholder advisory group and an interdisciplinary supervisory committee were engaged throughout the research process and provided critical real-world insights to help guide this work. Members of the advisory group included representatives from the Provincial Health Services Authority, Stroke Services BC, BC Emergency Health Services (BCEHS), BC Emergency Medicine Network, Northern Health, a patient partner with lived experience of stroke and survivorship, and researchers with methodological and content expertise. The engagement of these key stakeholders ensured that the research was responsive to real-world realities, reflected the needs and priorities of the current health environment, adopted robust methods, and was readily applicable and transferrable to inform healthcare practices. For example, members of the EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 110 advisory group provided key contextual information related to the structure of health services for stroke across the province such as the “Tiers of Service” document found in Appendix One. Academic and supervisory committee members were content experts in the fields of rural health, cardiovascular physiology, and health services and policy, providing methodological expertise facilitating access to the administrative data, and contributing clinical and program-based expertise. All of whom contributed invaluable experiential insights throughout this work. Finally, the inclusion of a patient partner with lived experience of stroke aligns with key research frameworks and strategies adopted by health research agencies globally, including the Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR) (Boaz & McKevitt, 2016; CIHR, 2014). The patient partner was critical in providing feedback and insight into the development and refinement of the qualitative components of this work, including recruitment posters and information sheets. The interview guide was created by the patient partner (Croome) and myself. Under the guidance of my supervisor and supervisory committee, I was responsible for all aspects of the research, including developing the research hypotheses and study design. I have also overseen the ongoing coordination of the study, data collection, data interpretation, and analysis processes. Through this journey and under the guidance of the team, I have gained experience in collaborative research practices and the process of engaging knowledge users in the design and implementation of responsive, inclusive, practice-driven research. In addition to this, training provided through the CIHR Health System Impact Fellowship (HSIF) program (https://cihr-irsc.gc.ca/e/51201.html), the CIHR, and Institute of Gender and Health (IGH) Trainee Award in Women’s Heart Health, the Libin Cardiovascular Institute, and involvement in the Heart and Stroke Foundation of EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 111 Canada’s National Women’s Heart and Brain Health Research Network leadership network allowed for broader links. Furthermore, attending key conferences, including the 2018 World Stroke Congress (Kandola et al., 2018) and the 2019 Canadian Stroke Congress (Kandola et al., 2019) provided me with insight into the latest in stroke care and innovation allowing a more comprehensive understanding of stroke on a global and national scale and contextualize this work. Research Design A multi-method design was adopted to allow for a more complete investigation into stroke care in the northern BC region. The last two decades have witnessed mixed and multimethod research emerge as an alternative to qualitative and quantitative approaches. These approaches are seen as a middle ground that bridges this dichotomy of qualitative versus quantitative (Doyle et al., 2009; Mertens, 2014; Tariq & Woodman, 2013). Quantitative research is often criticized for stripping contextual information, whereas qualitative approaches are often critiqued for their lack of generalizability and objectivity (Richards, 2005; Tashakkori & Teddie, 2003; Tariq & Woodman, 2013). Mixed and multi-method approaches bridge these two dichotomies by allowing for a focus on generalizability and context. Often referred to as the third methodological movement, mixed and multi-method approaches have gained greater traction and popularity in the field of health sciences research over the last number of years (Creswell, 2011; Tashakkori & Teddie, 2003; Maxwell et al., 2015). This is in part due to the increasing recognition of the importance and need for different types of knowledge, particularly when considering complex clinical issues that impact real people and their lives. Examples in published literature can attest to this increasing use of mixed and multi-method approaches in health-related research across EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 112 disciplines, including pharmacy (Johnson et al., 2010), cardiology (Curry et al., 2009), and nursing (Ploeg et al., 2010). Differentiating Multi and Mixed-Method Research The terms multi and mixed-method are often used interchangeably (Andrew & Halcomb, 2007). While the two approaches share a large overlap there are some key defining characteristics. First, 'multi-method studies' are those in which multiple types of qualitative or quantitative data are collected (Creswell & Plano Clark, 2007). This is different from 'mixed-method studies' that “collect and incorporate both qualitative and quantitative data." (Creswell & Plano Clark, 2007, p. 273). Second, the multi-method approach is a research design that is driven by an inductive or deductive theoretical position and is comprised of more than one qualitative or quantitative component (Creswell, 2003) each of which has its distinct philosophical underpinnings. It can be defined as the conduct of two or more research methods, each conducted rigorously, with each complete in itself and able to stand alone (Tashakkori & Teddie, 2003; Morse, 2003). While each component can be viewed individually, together they are sufficiently linked to provide a more comprehensive understanding of the research problem as a whole. Finally, mixed-method research involves the mixing of qualitative and quantitative data often early in the research process or at multiple points throughout the process (Tashakkori & Teddie, 2003). This is in contrast to a multi-method design, in which datasets are integrated, often at a later stage, typically during the interpretation of findings (Jiggins Colorafi & Evans, 2016; Tashakkori & Teddie, 2003). The feature of independence (i.e., standalone projects) is a defining characteristic of multimethod research and is what differentiates this approach from mixed-method research. However, some researchers argue that the mixed method approach is just a more specific EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 113 form of conducting multi-method research (Jiggins Colorafi & Evans, 2016; Morse, 2003). While this multi-method approach provides a means to obtain a more comprehensive understanding of the research phenomenon, it is important to note that caution must be used to avoid the ad hoc mixing of methods or ‘muddling methods’ (Stern, 1994). Without due attention and care, the improper mixing of methods can pose serious threats to the validity of the methodological assumptions that are violated (Creswell, 2011; Morse, 2003). As such, the philosophical foundations and practical applications of each must be considered. Philosophical Foundations The selection of theoretical approaches is not only made on the specific needs and demands of a given research problem but is also driven by the theoretical positioning or paradigms of the researcher. Denzin and Lincoln (2011) summarize a paradigm as ‘a set of beliefs that guide action’. Similarly, Neuman (2000) and Creswell (2003) refer to the paradigm as the epistemology, ontology, or even research methodology. In the research context, these beliefs reflect the researcher’s worldview and are composed of four sets of philosophical beliefs, including axiology, ontology, epistemology, and methodology (Creswell, 2011). Axiology refers to the researcher's ethics (Creswell, 2011). Ontology refers to the beliefs about reality and can be broadly divided into realist and relativist views. Epistemology refers to the researcher's relationship with the research and the knowledge generated (Creswell, 2011). The methodology can be defined as the philosophy that guides the gathering of data (Creswell, 2011). A discussion of each of these philosophical considerations is required to ensure that the research is rooted in the appropriate philosophical foundation and is of high quality. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 114 From a philosophical perspective, pragmatism is the orientation that is most often associated with multi-method research (Morgan 2007; Tashakkori & Teddlie, 1998, 2003a), although some prefer to associate multi-method research with the transformative perspective (Mertens, 2003). Pragmatism can be defined as ‘a deconstructivist paradigm’ that debunks the concepts of ‘truth’ and ‘reality’ and focuses on ‘what works’ as the truth regarding the research question(s) under investigation (Creswell, 2011; Greene, 2007). This pragmatic approach rejects ‘either/or choices’ associated with paradigm wars, advocates for the use of multi-method in research, and acknowledges that the values of the researcher or research team play a large role in the interpretation of the findings (Tashakkori & Teddlie, 1998, 2003a). Answers to the research questions in multi-method research are presented in both narrative and numerical forms (Creswell, 2003; Tashakkori & Teddlie, 1998, 2003a). The transformative paradigm is one in which reality is viewed as a social construct that may differ depending on context. It aims to give greater power and voice to local knowledge and maintains that research and evaluation can and should play a role in identifying and alleviating inequity and marginalization associated with factors such as race, age, socioeconomic status, gender, and disability (Mertens, 2003). In this study, pragmatic and transformative perspectives provided an orientation to the importance of situating the research within the small urban, rural, and remote context that was being explored and informed the research in the choice of design, methods, and interpretation of the findings. Traditionally, qualitative and quantitative approaches have been viewed as dichotomous. However, advocates for multi and mixed-method research reject the notion of a qualitative-quantitative divide. Both Creswell (1994) and Patton (2002) state that “a false dichotomy exists between qualitative and quantitative approaches” and that “researchers EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 115 should make the most efficient use of both in understanding social phenomena.” Wolcott (2002) further argues that “placing the approaches in opposition, does a great disservice by detracting from the contribution to be made by each, including what each can contribute to the other (p.99).” This false dichotomy is further evidenced by the presence of positivist assumptions in some qualitative approaches (Yanchar, 2006). For example, there are positivist tendencies in many versions of grounded theory (Charmaz, 2007), including the articulation of explicit analytic procedures and research strategies by Glaser and Strauss (2017). Further understanding the epistemologies, ontologies, and methodological considerations of quantitative and qualitative approaches individually and together is important. Researchers must fully grasp the philosophical underpinnings of adopting each. This helps the researcher appreciate more fully the opportunities and tensions that exist when adopting a multi-method research approach. The key points of each philosophical stance are summarized at the end of this discussion in Table 5. Quantitative Research Approaches. Quantitative approaches are rooted in positivist epistemology. French philosopher Auguste Comte (1798-1857) is regarded as the founding father of positivism (Arghode, 2012; Yilmaz, 2013), a philosophical approach that continues to dominate most scientific fields today. A positivist view assumes that it is possible to obtain hard, secure, and objective knowledge (Creswell, 2011). Thus, quantitative research is designed to reflect these values and focuses on generalization and abstraction. Thought in positivism is governed by hypotheses and stated theories. From an epistemological stance, positivism would assert that there are known truths and that knowledge can be objectively measured. As such, quantitative research uses a deductive approach (i.e., broad to specific) and is well suited to explore the “when”, “how EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 116 much” and “how many” questions (Park et al., 2020). It is most often used in questions that require the quantification of problems, theory testing, intervention research, and the exploration of the efficacy and effectiveness of new treatments (Neegaard et al., 2008). Ontological belief assumes that the real world is observable and measurable. Thus, positivist research focuses on quantitatively measuring independent and observable data through a single apprehensible reality (Healy & Perry, 2000). By adopting this approach, the researcher assumes the position of an independent observer, actively seeking to minimize bias. There is a deliberate effort to use a rational, consistent, verbal, and logical approach to maintain a clear distinction between facts and value-based judgments. The researcher is also expected to make the distinction between science and personal experience. This means that the researcher’s interactions with the data are viewed as being value-free and it is assumed that the data do not change because they are being observed. Healy and Perry (2000) refer to this as a ‘one-way mirror’, sometimes also coined as ‘God’s eye view’ (Lincoln & Denzin, 2011). Positivism views science as mechanistic and systematic; it is a way to get to the truth, to understand the world well enough so that it might be predicted and controlled. Formalized statistical and mathematical methods are the techniques of choice for this method of inquiry (Creswell, 2011). Quantitatively-informed stroke research contributes to the understanding of disease in many ways. In its earliest forms, it is commonly associated with providing epidemiological insights through large-scale population-based studies such as the Harvard Stroke Registry in the early 1970s, which became the first computer-based registry of prospectively studied stroke patients (Mohr et al., 1978). The information derived from these studies, such as disease incidence, morbidity, and mortality, are common contributions to better EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 117 understanding the patterns of disease. It is also a method of choice for inquiry in clinical trials, particularly for determining the efficacy and effectiveness of management and treatment strategies. This includes pharmacological drug development and the application of certain treatment regimens such as studies testing the effectiveness of oral anticoagulants for patients with atrial fibrillation (Dentali et al., 2012; Miller et al., 2012; Ruff et al., 2014). The knowledge and insights garnered from such studies have critical implications for health systems and health service delivery in terms of improving patient care, longevity, and quality of life. Adopting a quantitative approach has many strengths and weaknesses. Quantitative methods, through the use of administrative health data, provide valuable patient-derived medical information that could not be captured through other means of data collection such as surveys or patient-based reporting (Pavis & Morris, 2015; Porter et al., 2016). Often collected by healthcare professionals, administrative data is less subject to biases related to patient recall and reporting. However, some administrative data, similar to the data used for this study, is not exclusively collected for research purposes, and akin to other forms of observational epidemiological data, it does not allow for conclusions on causality nor provide measures on patient experience (Mazzali et al., 2015). Despite this, using this type of data is an appropriate method to investigate population health and important health service issues that could not be explored through other means, including prospective trials and includes utility in studying conditions, like stroke (Yu et al., 2016) to better understand health service utilization, disease association, and the impact of research knowledge translation on large scale populations (Caplan, 2016). EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 118 In this study, administrative health data in both Phases A and B provided important information into health service use over an extended time both across BC and Northern Health. In Phase B, administrative data were used to showcase performance insights into key indicators of stroke care in the Northern Health region. While the use of administrative data provides valuable information on EHS use for stroke with Northern Health and beyond, it does not allow for the exploration of patient and caregiver experience factors that are important in the decision to access EHS and seek emergency medical care for stroke. This gap in understanding was addressed by adding a complementary qualitative phase, Phase C, to this work. Qualitative Research Approaches. Qualitative research is grounded in the social sciences and focuses on the contextualization of naturalistic settings. It has defining characteristics that separate it from quantitative research. These include; a) a belief in multiple realities; b) a commitment to identifying an approach that supports the phenomenon being studied; c) a commitment to the participant’s point of view or standpoint; d) conducting inquiry in a manner that limits disruption to the natural context; e) acknowledging the participation of the researcher in the research process; and f) reporting data in a literary format that is rich with participant commentaries (Steubert & Carpenter, 2011). In contrast to quantitative research, which is centred around the existence of a single reality, qualitative researchers hold a central belief that multiple realities or perspectives exist when trying to understand a situation (Boyd, 2001). As Creswell (2007) states “I think metaphorically of qualitative research as an intricate fabric composed of minute threads, many colors, different textures, and various blends of material. This fabric is not explained EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 119 easily or simply. Like the loom on which fabric is woven, general worldviews and perspectives hold qualitative researchers together” (p.35). Qualitative research approaches have diverse philosophical foundations. Commonly associated paradigms, sometimes considered to compete with one another, include positivism, post-positivism, critical theory and related ideological positions, and feminist theory (Guba & Lincoln, 1985). While the philosophical underpinnings in qualitative research are highly variable and theoretical, in nature, they all embody the central characteristics of interpreting and understanding the phenomenon within the natural context (Morse et al., 2012). The interpretivism paradigm is long credited to be founded by the philosopher Max Weber (1864-1920) (Heshusius & Ballard, 1996). From an epistemological perspective, interpretivism can be understood through the belief that the relationship between reality and research is understood through one's perceived knowledge. The research focuses on the specific and concrete and seeks to understand the phenomenon as rooted within the natural context (Morse, 2003). Ontologically, interpretivism is rooted in the belief that reality is multiple and relative (Husdon & Ozanne, 1988) with no direct access to the real world. In contrast to positivism, interpretivism avoids rigid structural frameworks and tends to adopt a more personal and flexible research approach (Carson et al., 2001). This approach is receptive to capture meaning in human interaction (Black, 2006) and to make sense of what is perceived as reality (Carson et al., 2001). The role of the interpretivist researcher is to seek an understanding of a phenomenon. The focus of the research is to understand and interpret; the distinction between facts and value-based judgments remains much less clear (Schwandt, 1998). In this approach, the EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 120 influence of both scientific and experiential knowledge is accepted. Interpretivist paradigms rest on the dissolution and acceptance of the rigid dichotomies of subject/object, knower/known, and fact/value (Schwandt, 1998). As McQueen (2002) states, interpretivists view the world through a “series of individual eyes” and choose participants who “have their interpretations of reality to encompass the worldview” (p.16). Qualitative methods are typically less structured than those adopted in quantitative research and are used to garner the meaning of a given situation or gather the perspectives of those affected by a particular issue. In qualitative research, methods may include observation and analysis of text, pictures, and other forms of data. However, interviews are most commonly used as a core means of examining human experiences (Rubin & Rubin, 2011). The use of qualitative methods allows for the generation of deep analyses of human experience and provides important contextual information to allow for greater explanatory power. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 121 Table 5 A Comparison of Positivist and Interpretivist Paradigms (Adopted from Carson et al., 2000 p.6) Positivist Interpretivist Ontology Have direct access to the real world Single external reality No direct access to the real world No single external reality Epistemology It is possible to obtain hard, secure, and objective knowledge Understood through perceived knowledge Research focus is on generalization and abstraction Research focus is on specific and concrete Thought is governed by hypothesis and stated theories Seek to understand specific context Methodological Considerations Focus of research Description and explanation Understanding and explanation Role of the researcher Detached, external observer To experience what is being studied Clear distinction between reason and feeling Aim to discover external reality rather than creating the object of study Techniques used by researcher Allow feeling and reason to govern actions Partially create what is studied, the meaning of phenomena Strive to use rational, consistent, verbal, logical approach Use pre-understanding Seek to maintain clear distinction between facts and value judgments Distinction between science and personal experience Formalized statistical and mathematical methods predominant Distinction between facts and value judgments less clear Accept influence from science and personal experience Primarily non-quantitative EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 122 Given that stroke care is a complex health service issue, the use of a multi-method approach was a conscious decision. As Greenlagh and Papoutsi (2018) state, in the real world, there is a mismatch between the ‘patient in the guideline’ and the ‘patient in the bed’ due to multi-morbidity and interacting sociocultural influences. This mismatch often translates to challenges in the implementation of best-practice guidelines in varying contexts including small urban, rural, and remote areas that are underserved (Snadden, 2001). Using a multi-method approach allowed for the inclusion of diverse perspectives of the patient and caregiver voice. This provided a more complete exploration of EHS use in northern BC by adding experiential and contextual insights that provided additional meaning to findings arising from the administrative data. The study methods are presented in detail in the following section. Methods This research follows an exploratory and explanatory, three-part, multi-method, retrospective approach. Two of the phases were quantitative and one qualitative. From a quantitative perspective, numeric data in Phases A and B provided important information on EHS utilization patterns for stroke across the province. This allowed for a greater understanding of usage trends across BC and more specifically across Northern Health. Phase C of this research included qualitative interviews that collected perspectives from stroke patients and their caregivers on seeking emergency stroke care. While the generalizability of this data is limited, findings provide contextual information and are potentially transferable to other similar small urban, rural, and northern regions. As Guba and Lincoln (1985) state “human behavior cannot be understood without reference to meanings and purposes attached by human actors to their activities” (p. 149). Details on each phase will now be outlined. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 123 Quantitative Phases There were two quantitative phases in this work. Phase A involved a provincial overview of EHS use for stroke while Phase B involved a more detailed examination of EHS use and stroke care in northern BC. Phase A. Phase A entailed a retrospective quantitative analysis of a multi-year dataset to determine differences and similarities in EHS use for stroke across BC. Data Collection. A Data Access Request (DAR) application was submitted to Population Data BC for a multi-year dataset (2015, 2016, 2017, 2018) based on a casefinding definition provided by Stroke Services BC and the data abstracted in the BC Ministry of Health DAD. The DAD is a Canadian database (exception of Quebec) for information on all separations from acute care institutions, including information for patient hospital admissions within a given fiscal year (April 1-March 31) (CIHI, 2016). The data captured in this database includes administrative, clinical, and demographic information on hospital discharges from acute inpatient care facilities. For illustrative purposes, acute inpatient elements are summarized in Appendix D. The DAR was submitted to Population Data BC in January 2019 and ethical approval was received from UNBC and Northern Health research ethics boards (E2018.0226.019.00H). The DAR was approved by the BC Ministry of Health Review Board in September of 2019 (Project Number Kandola 19-034). Before the dataset was released, both my supervisor and I were required to undertake mandatory privacy training through the BC Ministry of Health. After contract execution, including institutional review, privacy training completion, the final dataset was released at the end of November 2019. A Virtual Private Network (VPN) was used to gain access to the Secure Research Environment (SRE) EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 124 per Population Data BC regulations. The file of stroke cases in BC provided by data steward, Population Data BC, on behalf of the BC Ministry of Health, included 76,193 cases from January 2015 through to March 2018. Data for the following fiscal year, including to the end of December 2019 was subject to a delay of a year, therefore a decision, in consultation with the supervisory committee was made to proceed with the data available for release at the time. Files were located from the ‘R: network drive’ folder in the ‘R:Data’ folder and uncompressed before being imported into SPSS. Each of the data files was converted into a readable format using the definitions outlined in the Data Dictionary provided by Population Data BC. Breaks for each variable line were inserted and variable names were assigned. Data Cleaning. The final raw data file contained a total of 76,193 cases and was imported into data analysis software, SPSS version 26.0 (IBM Corporation, 2019) for cleaning in the SRE. After extensive data cleaning was undertaken, which included removing cases where stroke was not the primary or most responsible diagnosis or was of non-vascular origin, 22,216 cases remained. Those not fitting the inclusion criteria (patient was under 18 years, cases where patients were residing in long-term care facilities or retirement homes, with a point of entry other than the ED, those with a transient ischemic attack) were eliminated. Further, each case was coded separately for each comorbidity. For example, a patient presenting with stroke, who also had hypertension and diabetes, appeared in the dataset three times. As such, these instances were identified and all duplicate recorders were removed. This resulted in a total of 20,612 patient cases that were identified as having experienced a stroke in BC after the data were cleaned and coded. It is recognized that whenever there are removals of duplicate files from a large dataset, there is a potential for error. Therefore, to mitigate threats to validity and reliability that this process may have EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 125 posed, data cleaning processes were rechecked and sample sizes were compared to expected volumes of stroke patients in BC to ascertain the accuracy of procedures and data integrity. Of these 20,612 cases, 358 patients were listed as out-of-province and not assigned to a health region, and 405 cases were documented as air and combination means of transport. As such, these cases (n=763) were presented in the findings but not included in the calculation of EHS use. A total of 19,849 patient cases were included for the final analyses. A summary of these steps is provided in Figure 8. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 126 Figure 8 Data Cleaning Process for Phase A Based on Emergency Stroke Admissions from the Discharge Abstract Database from January 2015 to March 2018 Raw data extract n=76,193 cases Removal of cases where stroke was not the primary diagnosis (n=53,977) n=22,216 cases Merging all comorbid conditions for a single patient into one case (n=1,604) Final sample of patients who experienced stroke in BC n=20,612 cases Removal of out-of-province (n=358) and air and combination means of transport cases (n=405) Final sample for calculation of EHS n=19,849 cases EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 127 Data Analysis. The total sample size for this phase was N=19,849. Descriptive statistics, including the size of the sample and the distribution of admissions across the five regional health authorities, were calculated using data analysis software SPSS version 26.0 (IBM Corporation, 2019) in the SRE environment. Cross-tabulation was performed to identify the number of cases per facility based on the mode of arrival to the hospital. A total of 80 facilities were represented in the data, each distinguished by a unique three-letter code, in addition to cases that were out-of-province transfers to BC. In compliance with the privacy legislation and data steward policies, the data file in the SRE could not be exported out of the SRE environment, therefore, an Excel file was created, and a column was created to input the facility name according to the three-letter code as per the Data Dictionary provided by Population Data BC. Separate columns were created for the name of the health authority and health service delivery area (HSDA). The health authority and HSDA for each facility were located and inputted in the Excel file and counts for each facility were entered. This Excel file was then imported into SPSS and using cross-tabulation, the total counts for each facility, HSDA, and health region based on the mode of arrival (air, combination, including air/ground/water, ground EHS, and non-EHS) were calculated. Fourth, cross-tabulation was used to calculate the count and percentage of ground EHS use and non-EHS use for BC, each health region, and each HSDA. Finally, EHS and non-EHS use was manually calculated per 100,000. While counts for air EHS and combination use of transportation were calculated, they were not included in the denominator used to calculate ground EHS and non-EHS use due to the decisions of air EHS and combination methods being outside of the scope of patient-level decision-making. EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 128 Phase B. Phase B explored the use of EHS among stroke survivors in northern BC, focusing specifically on patients who presented to the EDs with neuroimaging capabilities, namely CT and/or MRI. These sites included Prince George, Quesnel, Terrace, Prince Rupert, Dawson Creek, and Fort St. John. The analysis was limited to these six sites as they are designated regional hospitals. While there are no stroke units in this region of BC, some limited stroke protocols may be in place. All of these centres have CT and/or MRI imaging capability and can provide thrombolytic therapy, both indicators of interest for this work. A seventh CT scanner became operational in Smithers, BC in January of 2019, however, this was not included in the analysis as data were not available for the study periods. Data Source. The CIHI 340 Stroke Special Project is a joint initiative between the Canadian Stroke Network, the CIHI, and the Hamilton Health Sciences Stroke Program (https://www.corhealthontario.ca/03-340-FAQS-May25F.pdf). This project was introduced to build capacity for all hospitals across the country to monitor stroke care delivery consistently regardless of hospital size, location, or stroke volume; to promote standardized and efficient data capturing for key processes and outcome information based on stroke best practices; to facilitate participation in stroke surveillance, quality improvement, benchmarking, and the Accreditation Canada Stroke Distinction Program; and to continue the collection of performance data beyond the Quality of Stroke Care Audit (CIHI, 2017). Northern Health collects data as part of its participation in the CIHI 340 initiative for each of its six designated regional hospitals with stroke services, including thrombolytic therapy and neuroimaging. Data Collection. In anticipation of the quantitative phases of data collection, I undertook steps for preparation including meeting with data analysts at Population Data BC EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 129 and the Northern Health Information Management Services (HIMS) to develop a better understanding of the data elements captured in the respective databases. I also completed graduate-level coursework in statistics and epidemiology and two CIHR modules on sex and gender training, including Sex and Gender in Primary Data Collection with Human Participants and Sex and Gender in the Analysis of Secondary Data from Human Participants (https://cihr-irsc.gc.ca/e/49347.html). In addition to these courses, I took the opportunity to complete directed readings, webinars, and workshops to enhance my knowledge of statistical techniques for sex and gender and the use of administrative health data. These activities added to my practical preparation and positioned me well to lead the data collection and analysis activities for this project. Phase B presents an overview and breakdown of EHS use for stroke across Northern Health’s six facilities with neuroimaging and thrombolytic therapy availability. This is undertaken using data from the CIHI 340 Stroke Special Project from January 2015 through December 2018. A DAR was made to the HIMS department at Northern Health to access the CIHI 340 Stroke Special Project. This was done once ethical approval was obtained in January 2019. The complete dataset was received in April of 2019. Data Cleaning. The raw data extract, in the form of an Excel file, provided by HIMS included a total of 1,523 cases. After extensive data cleaning, which included screening for duplicates and cases not meeting the inclusion criteria (cases where patients resided in longterm care facilities or retirement homes, presented to or were transferred to sites other than Prince George, Quesnel, Terrace, Prince Rupert, Fort St. John, or Dawson Creek, those with a transient ischemic attack, the first point of entry was not the ED or experienced strokes that were non-vascular in origin) and ensuring cases were coded under the correct calendar year EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 130 (e.g., 2016 case coded under 2017) 1,203 cases resulted. It is recognized that whenever there are removals of duplicate files from a large dataset, there is a potential for error. Therefore, data cleaning processes were rechecked both by myself and through independent review and sample sizes compared to expected volumes of stroke patients in northern BC to ascertain the accuracy of this process. Inclusion criteria for Phase B were based on the same criteria as in Phase A, with the exception of being limited to the six main imaging sites in Northern Health. This file was then imported into data analysis software, SPSS version 26.0 (IBM Corporation, 2019). Similar to Phase A, each case was coded separately for each comorbidity. For example, a patient presenting with stroke, who also had hypertension and diabetes, appeared in the dataset three times. As such, these instances were identified and all duplicate recorders were removed. Documented risk factors for stroke, including diabetes and hypertension, were recoded in a separate column from yes and no to 1 and 0 using the transform function in SPSS. A total of 784 patient cases were identified after the data were cleaned, coded, and subsequently included in the analyses. A summary of these steps is provided in Figure 9. EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 131 Figure 9 Data Cleaning Process for Phase B Based on Emergency Stroke Admissions Data from the Canadian Institute for Health Information Stroke Special Project 340 from January 2015 to December 2018 Raw data extract n=1,523 Removal of cases where stroke was not the primary diagnosis (n=320) n=1,203 Removal of duplicate recorders (n=419) Final sample n=784 EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 132 Data Analysis. Similar to Phase A, data analysis was undertaken using quantitative data analysis software, SPSS version 26.0 (IBM Corporation, 2019) with an alpha level of p<0.05 for all statistical tests unless otherwise noted. This included univariate, bivariate, and multivariate analysis. The collection of data was guided by a standardized process of reporting standards required by CIHI, therefore all fields required by CIHI and those meeting the level of service in this region were included (Appendix D). The total sample size for this phase was N=784. Descriptive statistics, including the size of the sample and the distribution of admissions across health authority (Northern Health), the HSDAs (Northern Interior, Northwest, Northeast), and facilities (University Hospital of Northern British Columbia, G.R. Baker Hospital, Mills Memorial Hospital, Prince Rupert Regional Hospital, Fort St. John, Dawson Creek, and District Hospital), provide insight into the population of study. Univariate analyses, including calculation of mean and standard deviation for age and the calculation of frequency and percentage for variables, including sex (female, male), admit by (EHS, non-EHS), stroke type (ischemic, hemorrhagic, unknown), completion of neuroimaging within 24 hours (yes, no), administration of thrombolysis (yes (ischemic, unknown stroke), no); past medical history (diabetes (yes, no), hypertension (yes, no)); discharge disposition (home, long-term care, hospice, transfer to Tier 3b facility, transfer to Tier 4 facility, transfer to other acute inpatient facility, died, left against medical advice); and prescription of antithrombotics upon discharge (yes, no, unknown, not eligible) was performed to allow for the description of the study sample across the health region, HSDAs, and facilities. Bivariate analyses included conducting chi-square tests to compare differences between HSDAs and facilities. Variable categories were collapsed dichotomously, where EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 133 appropriate, to conduct chi-square tests. Decisions to collapse categories were made through discussion with members of my supervisory committee. Variable coding was as follows: age <65 (coded as 0), 65+ (coded as 1); sex (female (coded as 1), male (coded as 0)); admit by (EHS (yes=1), non-EHS (no=0)); stroke type (confirmed (yes=1), unknown (no=0)); completion of neuroimaging with 24 hours (yes=1, no=0), administration of thrombolysis (received=1, not received=0); past medical history (diabetes (yes=1, 0=no), hypertension (yes=1, 0=no)); discharge disposition (home (yes=1), not home (no=0)); and prescription of antithrombotics upon discharge (received=1, not received=0). (Note: When testing for differences based on neuroimaging completion between facilities, SPSS flagged 25.0% of the cells with expected values less than five, five percent higher than the generally accepted 20.0% (Field, 2013), therefore, a decision was made to not report on this p-value as it would be less accurate. Moreover, given data were only available for imaging within a 24-hour period, the variability as opposed to the statistical significance between sites should be the focus. However, it is also to be noted that such issues surrounding statistical analysis pertaining to small volumes in rural health research are not uncommon as noted by Statistics Canada (2002) in The Health of Canada’s Communities, (p.2). Data were further analyzed for differences among individuals using EHS and nonEHS, as well as patient sex. Measures of interest included completion of neuroimaging, administration of thrombolytics, prescription of antithrombotics. Potential differences for the completion of neuroimaging within 24 hours (yes=1, no=0), administration of thrombolytics (received=1, not received=0), prescription of antithrombotics (received=1, not received=0) EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 134 based on mode of arrival (EHS=1 or non-EHS=0) and patient sex (female=1, male=0) were also explored using chi-square tests. With a dichotomous dependent variable, binary logistic regression was chosen to explore possible predictors of EHS use. The dependent variable was EHS use (EHS (coded as 1) versus non-EHS (coded as 0)). While a number of possible predictors for EHS use have been documented in the literature and outlined in Chapter Two, including ethnicity and stroke severity, they were not all captured in the dataset used for this work. There were also several comorbidities such as chronic obstructive pulmonary disorder, malignancies, and various mental health diseases documented in the dataset used for this work. However, there was no established link between these and the risk of stroke, therefore, a balance was struck between knowing potential possible predictors as identified in the literature with the possible predictors available in the dataset including the main modifiable risk factors of stroke, diabetes, and hypertension. Independent variables, including age (<65 (reference category) and 65+), sex (female (reference category) and male), and stroke type (ischemic (reference category), hemorrhagic, unknown), past medical history (hypertension, diabetes), and geographic location, including HSDA (Northern Interior (reference category), Northwest, Northeast) and facility (Prince George (reference category), Quesnel, Terrace, Fort St. John, Dawson Creek, Prince Rupert) were tested using binary logistic regression to determine possible predictability of EHS use. All variables were entered into the equation simultaneously because there is no specific evidence to indicate the order or importance of one variable over another (Tabachnick & Fidell, 2019). Therefore, each predictor variable was evaluated as if it entered the equation last. A total of five different models were tested using different combinations of independent variables. While differences for hypertension EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 135 were observed based on hypertension at the bivariate level (i.e. chi-square test), these differences and differences at the facility level were not significant at the multivariate level and thus were removed from the model. The validity of the final logistic regression model was assessed using the Hosmer and Lemeshow Goodness-of-Fit test and the c-statistic was used to assess the discrimination and strength of the model (Field, 2013). While many modifiable risk factors for stroke were outlined in Chapter One and have been documented in the literature, only hypertension and diabetes, the main risk factors, were captured in the current dataset and therefore included in the analysis. The inclusion of other comorbidities and risk factors such as smoking status and stroke characteristics such as stroke severity may have yielded additional insights but were not captured in the dataset therefore not included. Akin to phase A, a lack of reporting on gender in the administrative databases capturing clinical information meant that gender-based analysis was not possible at this time. Finally, a small sample size meant it was not possible to explore interactions within the model between factors such as sex and age. Qualitative Phase In addition to the two quantitative phases, a complementary qualitative phase was included. In this study, Phase C provided critical contextual insights to the work and is outlined below. Phase C. Phase C uses a qualitative descriptive approach (Sandelowski, 2000) with semi-structured qualitative interviews to explore decision-making around EHS use by patients and their caregivers following the onset of stroke symptoms. Of specific interest was exploring awareness of stroke and stroke symptoms as well as factors associated with initiating the use of EHS. Questions to guide the interview were co-created and validated by EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 136 the patient partner with lived experience of stroke and survivorship in northern BC. The interview guide can be found in Appendix E. Qualitative research is an empirical form of investigation that typically uses an inductive (theory generating versus theory testing) approach to describe the participant’s experience and perception of the world and its phenomena (Neegaard et al., 2008; Sandelowski, 2000). Its use is more suited to the understanding of “why”, “how”, and “what” questions surround human behavior, views, barriers, and motives (Sandelowski, 2000). It is used in the identification of problems, the generation of hypotheses, concept development, and theory formation (Dehlholm-Lamebersten & Maunsbach, 1998; Neegaard et al., 2008). A qualitative descriptive approach (Sandelowski, 2000) was used to further an understanding of the experiences of patient and caregiver participants in seeking emergency stroke care. Unlike traditional qualitative methodologies, such as grounded theory, which follow a prescriptive process of procedures and techniques, qualitative description is rooted in the principles of naturalistic inquiry and is flexible in nature (Neegaard et al., 2008; Sandelowski, 2000). It was used to elucidate possible mechanisms underlying the decisionmaking process to call for EHS or go to the hospital using private transport means. It was anticipated that this approach would help develop a more comprehensive description of helpseeking behaviors and present experiential insights that could be applied to clinical and policy-making decisions, as well as initiatives to improve current systems of care. Research using qualitative description seeks to discover and understand a phenomenon, a process, or the perspectives and worldviews of the people involved (Caellei et al., 2003; Merriam, 1998). Qualitative description is generally viewed as the “poor cousin” to more developed qualitative methods. It is commonly criticized for being too basic and EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 137 lacking rigor. However, as Sandelowski (2000) states, the increasing complexity of qualitative methods makes the rediscovery of qualitative description necessary. The philosophical, epistemological, ontological, and methodological assumptions underpinning qualitative description lend support to it as a systematic approach to qualitative inquiry. As a novice and junior qualitative researcher, with limited time and resources (Neergaard et al., 2009), this approach was a well-suited introduction to the world of qualitative research. It enabled me to work with the least amount of pre-existing theoretical and philosophical commitments (Sandelowski, 2000). Ontologically relativist and epistemologically subjectivist, this qualitative descriptive approach holds the view that reality is subjective and accepts the reality of all objects, relies on individual awareness of it, and emphasizes the researcher's contribution. Methodologically, qualitative description seeks to describe the phenomenon literally, attempting to interpret findings without moving too far from the language of the participants (Bradshaw et al., 2017). Therefore, qualitative description does not require the researcher to move far from the data nor require a highly abstract rendering of the data, in contrast to other qualitative designs (Lambert & Lambert, 2012). Despite this, it does entail some degree of interpretation and researchers engage in a complex analytical procedure to establish meaning in data. Two important elements of a qualitative description involve learning from participants and their descriptions and using this knowledge to inform interventions (SulivanBolyai et al., 2005). As such, this design is well-suited and aligns with the theoretical framework of IKT in this study which seeks to ensure that the research is responsive and reflective of real-world realities. Finally, the simplicity in the way the data is presented, EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 138 makes it accessible to patients, caregivers, decision-makers, and the general public. As such, it is hoped the combination of these elements will allow for more rapid knowledge mobilization, translation, uptake, and application. Recruitment and Study Sample. Participants were recruited using a multi-pronged approach, including social, community, and health-related recruitment methods. First, physicians throughout the health authority were provided with information about the study, including participant information and consent forms, and contact details to pass onto their patients. This information was also provided to the Directors of Care and ED leads at each of the six imaging sites. An invitation to participate along with study information was further shared by the Patient Voices Network on their website and through targeted email to their members in the northern region. The social media recruitment strategy included posting study information to Facebook, Twitter, and relevant community groups and relied on the sharing of this information by interested parties. Community-based efforts included providing recruitment posters and information sheets to the Prince George branch of the Stroke Recovery Association of BC, the Prince George Brain Injured Group, and regional offices of the Northern Brain Injury Association in each of the communities with neuroimaging. The information sheet and posters included contact information for participants to call if they were interested in participating. Both the recruitment poster and information sheet can be found in Appendix F and G respectively. Inclusion and Exclusion Criteria. Individuals were eligible to partake in qualitative interviews if they were over the age of 18, received care at one of the six CT/MRI imaging facilities in Northern Health, had a stroke (ischemic or hemorrhagic) in the last five years (amended from the original two years). Individuals who were unable to provide informed EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 139 consent, resided in long-term care facilities or retirement homes, those with a transient ischemic attack, or experienced stroke that was non-vascular in origin were excluded from this phase. Due to the nature of the research, patients who were unable to complete the requirements of data collection, such as those with considerable speech difficulties that would be unable to share their experiences and perspectives, were also excluded. Data Collection. In preparation for the qualitative data collection, I underwent three training activities. First, I took part in a multi-day workshop offered by the BC SUPPORT Unit, Northern Centre, in June of 2017, on the foundations of patient-oriented research. I also took the opportunity to partake in additional training and webinar offerings as they were available throughout my doctoral training to better understand how to work with patients as partners in health research. Second, I undertook some directed readings to enhance my knowledge of interview techniques and qualitative approaches. This enabled me to gain a strong theoretical foundation. Third, three mock interviews were undertaken. These allowed for the testing of study methods, including recruitment and data collection processes, as well as the piloting of interview questions. Participants were asked to provide feedback on the questions, including the relevance, order, and language used. I also reflected upon my previous experience of conducting interviews with patient participants as part of gathering patient perspectives for other research that I had been involved with as a research associate. Throughout this process, I worked with my supervisor to discuss interview processes and strategies, as well as reviewing approaches that could be used if a participant became upset. These activities contributed to my practical preparation and positioned me well to lead the data collection activities. EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 140 Semi-structured interviews were used to collect participant insights related to experiences of seeking and receiving emergency stroke care. In semi-structured interviews, the researcher has a specific topic to learn about, prepares a limited number of questions in advance, and plans to ask follow-up questions (Rubin & Rubin, 2012). This is in contrast to unstructured interviews that might have few predetermined questions or structured interviews that include highly specified and directed questions (Roulston & Choi, 2018). The use of interviews as a data-gathering tool (Doody & Noonan, 2013) in this work promotes a greater understanding of some of the mechanisms behind patient and caregiver decision-making. It was anticipated that the findings from the interviews may eventually be used to help foster the development of more refined and responsive healthcare resources and awareness campaigns to target high-risk patients and their caregivers. Questions were designed to include those that were exploratory in nature, enabling participants to share issues that were of importance to them. As well, questions were developed that could help elucidate the key concepts in the research question, and to reflect the findings and gaps identified by the literature review (see Chapter Two). Questions were drafted and the patient partner provided feedback. Based on this, questions were removed, added, and re-worded to simplify language and remove jargon. All changes to the interview guide, including making changes that were requested by the REB, were made in consultation with the patient partner. Semi-structured interviews require the interviewees to answer at length and in vivid detail. The goal of using this approach is to gather rich and detailed information related to experiences, narratives, and stories. Consistent with this approach, the researcher may seek to gain a general understanding of the participants’ experiences and then works to focus more narrowly on the planned items that speak to the research question and gaps in knowledge. EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 141 The questions are open-ended, and participants are free to respond how they choose, including to provide elaborate answers, to disagree with the question, or to raise new issues (Rubin & Rubin, 2012). Although a set of questions were developed, they served as a guide as opposed to being fixed and were not always asked in the same order to each participant. Also, as the analysis progressed, new questions were integrated that allowed for a deeper exploration of the emerging concepts. Once participants had agreed to participate, interviews were conducted either inperson or over the telephone. This was based on participant preference and logistical considerations, including my inability to travel to participants. Telephone interviews were conducted with participants that were located in geographically distanced communities. Some participants, including some who wanted to travel to Prince George despite living at a distance, preferred a face-to-face interview. Verbal consent and an agreement to record interviews were obtained before the start of each interview, regardless of in-person or over the telephone. Some patient participants were alone in being interviewed, while others elected to bring their caregiver(s) to assist with recall and narration. Generally, interviews with more than one participant were longer in duration. All interview respondents were provided the opportunity to review their interview material post-transcription to ensure that it was reflective of their experience. Once three interviews were completed, my supervisor and I met to review the interview transcripts in depth. My supervisor provided feedback on where additional prompts may be useful to gather more depth and encouraged the use of the curve technique (positive, negative, positive) to help frame the interview and ensure that the interview was terminated on a positive note. This feedback helped me to respond to situations in which participants EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 142 became upset, particularly when reflecting on their negative experiences or emotions related to their medical care, and allowed participants to end the interview focused on their hopes for the future. Data Analysis. A total of 12 semi-structured, qualitative interviews were undertaken either in-person (n=5) or by telephone (n=7) with 19 individuals, including patient participants (n=12) and caregiver participants (n=7), all of whom provided informed consent. Interviews ranged from 23 to 52 minutes in duration and were digitally recorded and transcribed by a trained transcriptionist. Recruitment and data collection continued until saturation was achieved, or the point at which no new codes are developed, and themes and subthemes have been fully fleshed out (Padgett, 2008 p 171). Consistent with the qualitative description, data from semi-structured, open-ended qualitative interviews were coded and then analyzed thematically. This was undertaken in an ongoing manner using an inductive and iterative approach and by generating a codebook. First, I familiarized myself with the data by reading through each transcript. During this initial read-through, anything that stood out as interesting or important was noted in the margin. Once all interviews were completed and transcribed, I re-read each transcript a second time and made additional notes if anything else stood out. Next, initial codes were generated and were discussed between myself and my supervisor to reach an agreement on the structure. All transcripts were independently coded by me. Peer checking of portions of the transcripts was also undertaken by my supervisor. Once there was agreement on codes, I used colored pieces of paper to create a conceptual mind-map, which provided a visual of the coded data and sort the data into themes (Braun & Clarke, 2006) which can be found in Appendix K. Recoding occurred organically as analysis evolved to ensure that themes made EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 143 sense in relation to one another and the broader dataset (Braun & Clarke, 2006). Sub-themes or “themes-within-a-theme” helped establish a hierarchy within themes (Braun & Clarke, 2006, p. 92). Once this step was completed, these established themes were further refined. This involved ensuring that the codes within and across each theme were congruent (Braun & Clarke, 2006). I began the process of writing up the findings. This process helped to gain further clarity in the analysis and to solidify the themes, including collapsing some subthemes, which resulted in greater clarity around data representation. The findings were then presented to the supervisory committee. Their meaning was explored and discussed before results were finalized and explanatory mechanisms were described. The data includes a collection of narratives that address the research questions. Together, these interviews help elicit an understanding of the mechanisms which may influence transport decisions of stroke patients and along with quantitative data will serve to inform future programming and policy decisions. Rigor and Quality Rigor can be defined as the quality or state of being very exact, careful, with strict precision, or the quality of being thorough and accurate (Cypress, 2017). However, as previously noted, the researcher must make the epistemological position of the research clear (Tobin, 2003). There are also considerations around rigor in multi-method research that need to be addressed. Like the theoretical discussion, this overview of rigor was structured from a quantitative and qualitative perspective. However, in itself, multi-method research has been proposed as a means to improve rigor and quality in research (Charmaz, 2008). Separating the discussion this way allows for a clear and more concise review of the issues about each. EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 144 Quantitative. Rigor in quantitative research is reflected in the principles of validity, reliability, and generalizability. Validity can be defined as the extent to which a concept is accurately measured (Tabachnick & Fidell, 2019). Reliability can be defined as the consistency of a measure (Tabachnick & Fidell, 2019). In Phase A, validity and reliability were ensured through the following means. First, the dataset used was collated using a standardized process of reporting standards required by the BC Ministry of Health. Next, the case-finding definition including exclusion and inclusion criteria for data extraction and variables was provided by Stroke Services BC. During this process I worked with data analysts at Population Data BC, to ensure data security and completeness. In terms of my research practice, I completed mandatory privacy training to ensure compliance with Ministry regulations. I also engaged with Population Data BC analysts when discrepancies concerning the dataset and analysis were encountered. Where appropriate, I revisited, reanalyzed, and rechecked the analysis. In Phase B, validity and reliability were ensured through the following means. First, the dataset used was collated using a standardized process of reporting standards as part of the CIHI Special Project 340, an evidence-based national stroke care quality improvement initiative. Data for this phase were abstracted using the case-finding definition including exclusion and inclusion criteria for data extraction and variables provided by Stroke Services BC for Phase A, except only six of the acute care facilities with CT/MRI imaging in Northern Health were included. I also regularly engaged with analysts at Northern Health HIMS to ensure data security and completeness. In terms of my research practice, I worked with analysts at Northern Health HIMS when discrepancies were found in stroke volumes in Phase A to cross-reference and confirm case number accuracy as well as to better understand EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 145 the process of data abstraction. To ascertain the accuracy and rigor of the statistical analyses plan, it was checked with my committee. Validity was also ensured through the use of appropriate statistical tests (Field, 2013). For example, as noted in the analysis section, a small sample size meant it was not possible to explore interactions within the model for variables such as age and sex, but the validity of the final logistic regression model was assessed using the Hosmer and Lemeshow Goodness-of-Fit test and the c-statistic was used to assess the discrimination and strength of the model (Field, 2013). Finally, when coding errors were located, rechecking of the data was undertaken and all statistical testing was crosschecked multiple times by me as well as through an independent review to ensure accuracy and completeness. Moreover, notes were kept throughout the research process including data collection, analysis, and reporting. Details regarding data cleaning, coding, recoding of variables, and analyses were described in the analysis section to allow for reproducibility. Data in both phases was abstracted from real-world hospital records and research was correlational. While correlation research has low internal validity, the external validity is high because nothing is manipulated. As such, the results are more likely to reflect relationships that exist in the real world (Tabachnick & Fidell, 2019). Learnings included reflecting on the need for robust data hygiene practices including going beyond keeping the final output and ensuring all data by table for presentation in the dissertation were stored in a single file for easy access and cross-checking. Additional skills were developed for presenting data including the process of auto-populating tables from Excel into Word to ensure consistent and accurate reporting. Further learnings around coding and recoding of variables were valuable in the training experience. For example, in addition EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 146 to rechecking data to confirm accuracy, there were some errors located in coding and there was a need to course correct through re-coding and re-running data the analysis which included ensuring that variables that were transformed and recoded from string to numeric (i.e. hypertension and diabetes) were correctly coded and no errors were present. There were important learnings that occurred through discussion on how to interpret or present the data when considering the small urban, rural, and remote context and the need to balance the contextual pieces with the need for strict precision in quantitative analysis. For example, as previously stated, it was decided that reporting on the administration of thrombolysis would be based on the total number of patients to receive thrombolysis including those documented as being of an unknown stroke type. In practice, in rural contexts, the decision to administer time-sensitive thrombolysis may be made based on the clinician’s clinical acumen and/or previous familiarity of the patient in small settings. In such cases, consideration of a risk-benefit analysis may be used when confirmation of imaging may be delayed due to health and human resource challenges. Generalizability can be defined as the extent to which the results may apply to a wider population (Tabachnick & Fidell, 2019). In both Phases A and B, generalizability was addressed through the use of large and inclusive population-based datasets. All persons admitted to the hospital with a stroke in BC and Northern Health have this data collected, therefore findings may be relevant to persons with stroke in BC but potentially also to a broader population with similar demographics such as regions identified in regions as outlined in the ‘Peer Health Regions’ map by Statistics Canada (https://www150.statcan.gc.ca/n1/pub/82-402-x/2017001/maps-cartes/rm-cr14-eng.htm). EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 147 Qualitative. The use of qualitative description as a research approach in health sciences is gaining traction. However, it is commonly criticized for its simplicity and lack of rigor. However, as Sullivan-Bolliyai et al. (2005) argue, proper use of this method can provide useful data for tailoring clinical interventions, scales, needs assessments, and questionnaires in mixed-method studies or concerning smaller independent research projects. Criteria for evaluation in qualitative research are more varied and can be considered somewhat controversial (Cohen & Crabtree, 2008). Rigor in qualitative research is most often governed by the principles of authenticity, credibility, dependability, transferability, and reflexivity (Lincoln & Guba, 1985). Credibility in qualitative work was ensured through establishing rapport with participants before commencing interviews, expressing compassion and empathy during the interview process, and through member checking and having participants verify the accuracy of the interview transcripts. Interpretations were made based on the data. Sandelowski (2010) refers to this as context-rich ‘thick descriptions’ of the data was provided which can foster credibility. Second, there was checking of findings with the research team. Their meaning was explored and discussed by the team before results were finalized and explanatory mechanisms were described. Integration was used to present the results comprehensively. As alluded to in the data collection section, dependability for the qualitative semistructured interviews was ensured through the concept of saturation. Dependability for this project was ascertained through both measurement and design. For example, face dependability was achieved through having the questions, that were used to guide the semistructured interviews, finalized with input and feedback from the patient partner. This helped ensure that the questions were reflective and relevant to the topic being explored and were as EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 148 accessible as possible to the target population. Dependability was facilitated through the consistency in procedures across participants over time. For example, the use of a semistructured interview question guide helped to ensure that the questions are asked by the same investigator in the same order to each participant. Furthermore, dependability was achieved through drawing on the understanding of research subjects. Finally, an audit trail was kept to document and describe the study procedures and processes. Studies are frequently evaluated according to their transferability and generalizability, or relevance to the wider population. While important in many forms of research, generalizability is less congruent with qualitative approaches as the goal of qualitative approaches is to gather insights. Regardless of this, there are several ways in which transferability can be addressed within a qualitative approach. First, the demographic characteristics of the participants were described so that comparisons with other groups can be possible. Second, there is an adequate description of potential threats to transferability throughout the sample and setting sections. Third, findings that are congruent with the theoretical orientation of the work, that values the considerable diverse perspectives and the engagement of knowledge users across the research process. Finally, suggestions for ways in which the findings from this study could be tested further by other researchers were made. In line with an interpretivist lens, a reflexive approach was used. As the lead researcher for this work, I took the regular opportunity to engage in reflexive practice throughout the research process. Reflexivity involves a process of continual internal dialogue and critical self-evaluation of the researcher’s positionality as well as an active acknowledgment and explicit recognition that this position may affect the research process and outcome (Bradbury-Jones 2007; Stronach et al., 2007). There were several aspects I EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 149 needed to consider as part of my reflexivity process. First, being a resident of Prince George, the main regional site in northern BC, meant that I might have had specific ideas of experience that could be unique from those residing in more outlying and remote communities. For example, EHS service levels in Prince George are very different from some of those in smaller centres, including rural and more remote communities. The level of stroke care and services, including regular access to neuroimaging and rehabilitation is also specific to this main site. Second, having been engaged in previous stroke research, including work focused on clinical guidelines, clinical trials, and community-based projects for stroke in this region meant that I was able to have a greater understanding of contextual factors of the region and place. However, this also meant I needed to consistently reflect on how these prior experiences could potentially impact my interpretation and conduct. In addition to the aspect of previous research experience in this area, having conducted the literature review before beginning the data collection phases, it was important for me to be cognizant of any preconceived ideas during the process of data collection. Finally, having had the opportunity to attend large stroke conferences and training events through the Heart and Stroke Foundation of Canada meant I was able to learn about some of the latest innovations and evidence in stroke care and management. There were moments when I needed to reflect on these learnings and address the frustrations I felt around the inequities rural and remote residents may face when trying to access emergency medical care for stroke. To promote a reflexive approach to the research and analysis, I used field notes to document my thoughts and experiences (Dickson-Swift et al., 2008). This formed an ‘audit trail’ throughout the research process and was important during the formulation of the research question, study design, decisions, data collection and analysis, and reporting. In EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 150 addition to keeping field notes, I journaled regularly. This was particularly important after the qualitative interviews and while analyzing and reporting the findings (Lincoln & Guba, 1985). I used this as an opportunity to become attuned to my reactions to respondents, preconceived ideas and assumptions, and the way the analysis was emerging and being reported. As Valentine (2007) suggests, reflexivity during analysis and reporting helps the researcher alert oneself to ‘unconscious editing’ because of one’s sensitivities and thus enables a fuller engagement with the data and a more in-depth and comprehensive analysis of it. Not only has this been proposed as a means to strengthen rigor, but as Tracy (2013) states, self-reflexivity “is an honest and authentic awareness of one’s own identity and research approach, and an attitude of respect for participants, audience members, and other research stakeholders” (p. 233). Triangulation. Multi-method approaches are often desirable in health research as each method reveals a different aspect of reality which can add depth to the understanding of a given issue (Denzin, 2004). However, there must be due care and attention paid to the process of interpreting qualitative and quantitative data to present a comprehensive review of the findings. Denzin (1978) proposed the concept of triangulation, defined as any attempt to combine or mix different methods in a research study, as a means to achieve this. Triangulation, as defined by Denzin (1978), is “the combination of methodologies in the study of the same phenomenon.” In this study, both method triangulation and data source triangulation were used. Method triangulation refers to the use of multiple methods of data collection about the same phenomenon (Polit & Beck, 2012). This data can be both qualitative and quantitative and can be gathered by different methods or by the same method from different sources or at different times. For example, first, two quantitative datasets from EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 151 sources, including the DAD and the CIHI Stroke Special Project 340 were used to understand EHS use patterns for stroke in BC and more specifically in northern BC. Second, field notes and semi-structured qualitative interviews provided insight into the experiences of seeking emergency stroke care. Data source triangulation was used through the collection of data from different types of people, including individuals and groups to gain multiple perspectives and validate data. For example, semi-structured interviews were conducted with both patient (stroke survivor) and caregiver participants from different regions of northern BC to better understand the medical journey of seeking emergency stroke care. A combination of quantitative and qualitative approaches was used to develop a more comprehensive understanding of EHS use among stroke patients in northern BC relative to the province, the impact of use on in-hospital care and times to treatment, and finally the decision-making process that is involved in determining EHS use in this region. There has been some critique in the literature for using triangulation as a means to combine qualitative and quantitative approaches. For example, Bryman (1992) has stated three main concerns with the multi-method approach. First, he proposes that because quantitative and qualitative research have different preoccupations, it is highly questionable whether they are tapping the same things even when they are examining similar issues. Second, he wonders how the researcher should respond if quantitative and qualitative findings do not confirm each other. Finally, he is concerned about the possibility of conflict being present in the results and what it means and comprises. Thus, in the context of combining qualitative and quantitative approaches the concept of triangulation is not as unproblematic as it may appear. Despite the critique of using triangulation as a means to EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 152 combine qualitative and quantitative approaches, there are numerous examples in the literature that demonstrate high success with its use (Charmaz, 2008; Creswell, 2011). Triangulation in the current study was methodological, using a multi-method approach to study the research problem (Greene & Caracelli, 2003; Hastings & Salkind, 2013). Across method triangulation was demonstrated through employing both qualitative and quantitative data collection methods in the same study (Denzin 1970; Tashakkori & Teddlie, 2009). Using methodological triangulation provided a framework for the discussion of the findings. Thus, quantitative approaches provided information on provincial and regional trends while qualitative inquiry provided richness and depth to these findings. Specifically, quantitative methods uncovered problematically low use of EHS for stroke across the BC. Qualitative inquiry added a depth of understanding for some of the potential reasons behind lower use of EHS for stroke across Northern Health by contextualizing some of the decision-making processes involved in deciding on care, including barriers and facilitators to help-seeking behaviors. An overview of this process is presented in Figure 10. EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 153 Figure 10 Triangulation and Integration Approach Ethical and Privacy Considerations There were several ethical and privacy issues to consider for this work. Each of these is detailed in the sections following. Ethical Considerations. This research was conducted in congruence with the TriCouncil Policy Statement: Ethical Conduct for Research Involving Humans (TCPS 2.0). I completed the TCPS2 core tutorial and the certificate can be found in Appendix H. Ethical approval was obtained from the University of Northern BC (E2018.0226.019.00H) and Northern Health Research Ethics Boards (RRC-2019-0056). Certificates of approval can be found in Appendix I and J respectively. Approval was obtained for study protocol and all information and consent forms. An amendment to the initial, approved research protocol was made after consultation with the supervisory committee, to expand the eligibility criteria to include participants within five years of a stroke event compared to the initial two years in EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 154 the first approved version of the protocol. This change was made due to participant interest and response. Informed consent was sought for the third phase of the study from patient participants and participating caregivers. Consent for the use of administrative data was not required since all data were de-identified. The original signed consent forms were stored in a locked filing cabinet on campus. A copy of the signed form was provided to the participant for their records. Verbal consent was also made available for those with literacy challenges or for those without access to the technology to print and or electronically sign and complete the form. This was documented in the study file. Consent was then reconfirmed prior to any data being collected. All research involving humans has the potential to cause harm and attempts were made to identify and mitigate potential risks. Of note, participants in Phase C were sharing emotionally sensitive and personal accounts of their illness experience, potentially giving rise to emotional or psychological risks. To mitigate this a number of actions were undertaken. With respect to patient confidentiality and data management, all possible efforts were made to keep all study-related information completely secure and confidential. In Phase C, it was possible, although of low likelihood, that the interview process may evoke an emotional stress response among respondents. Therefore, it was proposed that in the event a participant becomes upset during the interviews, the interview would be stopped and ask the participant if they wish to continue or withdraw from the study. Further, all participants were provided with a list of free or low-cost counseling and psychosocial resources available to them in their area. This was attached to the information form and consent letter. Participation in this study was completely voluntary, there was no compensation provided to the participant for EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 155 their participation, and participants were free to withdraw from the interview at any point in time without any implications for their future healthcare. During the interviews, there were no adverse events or episodes of notable distress. While participants were at times emotional when reflecting on some parts of their journey, they were keen to be involved in research or to share their perspectives. Patient Confidentiality and Data Management. A data management plan was developed for this study in consultation with the Information Governance Officer at UNBC. For Phase A, the data extract was housed on the Population Data BC SRE. The SRE is a central server accessible only via an encrypted VPN through a firewall and a two-factor authentication process. It provides secure storage and backup, a centralized location for access and processing of research data, and it meets the security standards and requirements of the Data Steward, the BC Ministry of Health. Data from the BC Ministry of Health was only released after both my supervisor and I completed a mandatory and comprehensive privacy training course and signed contracts pledging confidentiality. All other data (Phases B and C) were collected electronically and stored on a password-protected computer. All participant records were assigned a unique identifier to minimize the risk of identification. All records were kept confidential and only the primary researcher or members of the supervisory team had access to the data. Data files were encrypted and stored following guidelines for Research Data Management Policy at the UNBC. For example, the master participant list for Phase C was encrypted and stored separately from the other data. All other study data were de-identified and stored in a password-protected file on a secure server. Furthermore, deliverables, including knowledge EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 156 translation outputs will not contain any identifiable information. Data will be stored for five years to maximize the opportunity for knowledge translation and dissemination. Summary The use of multi-method research has been steadily increasing in social and health sciences as an alternative paradigm to classic qualitative, quantitative approaches (Bowers et al., 2013, Glogowska, 2011; Ivankova & Kawamura, 2010). Multi-method research combines the use of quantitative and qualitative approaches and is based on the assumption that collecting diverse forms of data will provide the best understanding of the research problem (Creswell, 2003; Ivankova & Kawamura, 2010). As such, it was an ideal approach to conduct this work as the healthcare issue is complex and cannot be easily captured using a single approach. A broad survey of EHS utilization data and in-hospital indicators of emergency stroke care in the first two phases of this work are more generalizable to a larger population. The third phase of qualitative interviews collected detailed views from participants and provide an overview of different patient journeys from symptom onset to the emergency department and beyond. While the generalizability may be somewhat limited, findings provide critical contextual information to complement the quantitative components of this work. Together all phases provide complementary data to elucidate deeper insights into medical care, patient decision-making, and health service utilization patterns for stroke. This three-part multi-method study addresses an important public health concern. It intersects the areas of epidemiology, health services, and health policy to better understand the role of stroke-related EHS use. Exploring these issues from a context-specific perspective is essential to the development and refinement of solutions and services that are reflective and responsive to the populations they are intended to serve. The following sections present the EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 157 results, with the quantitative findings from Phases A and B in Chapter Four, and the qualitative findings from Phase C in Chapter Five. EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 158 Chapter Four: The Use of Emergency Health Services for Stroke Across British Columbia and the Impact of Mode of Transport and Patient Sex on the Receipt of Emergency Care in Northern British Columbia This chapter presents the quantitative findings for this dissertation by phase. First, findings from Phase A, including an overview of the provincial use of EHS for stroke, are provided by the regional health authority and HSDA. This is undertaken using data from the BC Ministry of Health DAD for stroke admissions to all BC emergency departments (ED) from January 2015 through March 2018. Next, findings from Phase B, specifically the Northern Health region, each of its three HSDAs (Northern Interior, Northwest, Northeast), and each of the six facilities in the region with neuroimaging capabilities (Prince George, Quesnel, Terrace, Prince Rupert, Dawson Creek, Fort St. John) are presented. An overview of findings based on the impact of EHS and patient sex on the receipt of emergency stroke care in this region is provided. A full description of the data sources, the application and approval processes, and the handling for each dataset used can be found in Chapter Three. Phase A: The Use of Emergency Health Services for Stroke Across British Columbia Phase A provides a descriptive overview of stroke-related EHS use across the province using data from the DAD for stroke admissions to BC EDs from January 2015 through March 2018. The DAD is a Canadian database (except Quebec) that captures administrative, clinical, and demographic information on all separations from acute care facilities, including patient hospital admissions in any given fiscal year (CIHI, 2016). Overall, 20,612 patient cases were identified as having experienced a stroke in BC after the data were cleaned and coded. Of these 358 patients were listed as out-of-province and were not assigned to a health authority and a further 405 cases were documented as air or combination mode of transport and therefore, these 763 cases were not included in the EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 159 calculation of EHS use. A total of 19,849 patient cases were included for the final analyses for calculation of EHS use. The use of EHS for stroke by geographic region is compared with national and provincial averages (Canadian Stroke Best Practices, 2018). These methods allowed for the identification of province-wide variations in EHS use. Emergency Health Service Use for Stroke by Regional Health Authority An overview of EHS use for stroke across the province is provided in Figure 11. The province-wide average of EHS use for stroke patients presenting to all EDs in BC from January 2015 through March 2018 was 67.9%. Each health authority, except Vancouver Coastal Health and Northern Health, was above the provincial average. Overall, EHS use ranged from 58.8% in the Northern Health region to 70.2% in the Fraser Health region for this same period. Figure 11 Emergency Health Service Use for Stroke by Regional Health Authority in British Columbia Based on Emergency Stroke Admissions from the Discharge Abstract Database from January 2015 to March 2018 (N=19,849) 67.0 Health Region Northern Health 58.8 67.9 41.2 Vancouver Coastal Health 64.9 35.1 Interior Health 68.2 31.8 Vancouver Island Health 69.4 30.6 Fraser Health 70.2 29.8 0 EHS 25 50 75 Emergency Health Service Use (%) Non-EHS National Average BC Average Note: BC average calculated from Discharge Abstract Database dataset and national usage data as per Canadian Stroke Best Practices (2018). 100 EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 160 While not the focus of the analysis, air and combination modes of transport are briefly reported here for context. Air EHS was documented from January 2015 to March 2018 as it is also used for the transport of some stroke patients between facilities in BC. All health regions, except Northern Health, had documented air EHS use as the primary mode of presentation to the ED. This included Interior Health (n=3), Fraser Health (n=5), Vancouver Island Health (n=25), and Vancouver Coastal Health (n=140) across this same period. Transport between multiple facilities was documented as ‘combination’ and included modes of transport, such as water, air, ground, and no EHS. Combination means of transport were documented in all health regions and included Fraser Health (n=1), Vancouver Island Health (n=10), Northern Health (n=21), Interior Health (n=23), and Vancouver Coastal Health (n=177). Emergency Health Service Use for Stroke by Health Service Delivery Area Health service delivery areas are mutually exclusive administrative health boundaries of land areas in BC, that are geographically adjacent and fit within the geographical structure of health authorities (BC Ministry of Health, 2016). Emergency health service use across the HSDAs ranged from 50.0% in the Kootenay Boundary (12) HSDA to 73.1% in the Central Vancouver Island HSDA (42). Each health authority, except Fraser Health, had HSDAs with below the 67.9% provincial average of EHS use for stroke. In Interior Health, EHS use ranged from 50.0% or 17.9% below the provincial average in the Kootenay Boundary (12) HSDA to 71.2% in the East Kootenay (11) HSDA. In Vancouver Coastal Health, each HSDA had below provincial average EHS use and ranged from 53.6% or 14.3% below in the Richmond (31) HSDA to 66.3% in the Vancouver (32) HSDA or 1.6% below. In Vancouver Island Health, EHS use ranged from 67.4% in the South Vancouver Island (41) HSDA to EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 161 73.1% in the Central Vancouver Island HSDA (42). Finally, each HSDA in Northern Health had below provincial average EHS use, including 56.2% or 11.7% below average in the Northwest (51) HSDA, to 59.2% or 8.7% below average in the Northeast (53) HSDA, and 61.3% or 6.6% below average in the Northern Interior (52) HSDA. A more detailed overview of the EHS use among stroke patients across each HSDA is provided by regional health authorities in Table 6. Vancouver Coastal Health 198,309 784,977 Fraser South (23) Richmond (31) 639,245 Fraser North (22) 219,467 Thompson Cariboo Shuswap (14) 295,763 362,258 Okanagan (13) Fraser East (21) 78,463 Kootenay Boundary (12) Fraser Health 79,856 East Kootenay (11) Interior Health Population of health service delivery area Health service delivery area Health Authority 494 2,397 3,363 1,385 1,020 1,899 250 378 Number of strokes (N) 53.6 (265/494) 68.5 (1,641/2,397) 70.8 (2,381/3,363) 71.8 (995/1,385) 66.2 (675/1,020) 68.7 (1,304/1,899) 50.0 (125/250) 71.2 (269/378) Emergency health services use % (n/N) 133.6 209.1 372.5 336.4 307.6 360.0 159.3 336.9 Emergency health services use (n/100,000) 46.4 (229/494) 31.5 (756/2,397) 29.2 (982/3,363) 28.2 (390/1,385) 33.8 (345/1,020) 31.3 (595/1,899) 50.0 (125/250) 28.8 (109/378) Non-emergency health services use % (n/N) 115.5 96.3 153.6 131.9 157.2 164.2 159.3 136.5 Nonemergency health services use (n/100,000) Mode of presentation to the emergency department Emergency Health Service Use for Stroke by Health Service Delivery Area in British Columbia Based on Emergency Stroke Admissions from the Discharge Abstract Database from January 2015 to March 2018 (N=19,849) Table 6 EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 162 140,452 67,885 Northern Interior (52) Northeast (53) 122,233 North Vancouver Island (43) 71,553 270,817 Central Vancouver Island (42) Northwest (51) 383,360 South Vancouver Island (41) 284,389 North Shore/Coast Garibaldi (33) 191 441 258 556 1,072 1,572 1,061 3,512 Note: Number before HSDA refers to code assigned to the region by the Government of BC. Note: Population data from public health authority webpages based on BC Stats 2016. Northern Health Vancouver Island Health 649,028 Vancouver (32) 61.3 (117/191) 59.2 (261/441) 56.2 (145/258) 68.0 (378/556) 73.1 (784/1,072) 67.4 (1,059/1,572) 65.4 (694/1,061) 66.3 (2,330/3,512) 172.4 185.8 202.6 309.2 289.5 276.2 244.0 359.0 38.7 (74/191) 40.8 (180/441) 43.8 (113/258) 32.0 (178/556) 26.9 (288/1,072) 32.6 (513/1,572) 34.6 (367/1,061) 33.7 (1,182/3,512) 109.0 128.2 157.9 145.6 106.3 133.8 129.1 182.1 EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 163 EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 164 Overall, there were variations in EHS use for stroke across the province. BC’s EHS use for stroke was 67.9%, higher than the national average of 67.0%. The use of EHS for stroke among regional health authorities ranged from 58.8% in Northern Health to 70.2% in Fraser Health. At the HSDA level, the Kootenay Boundary (12) HSDA in Interior Health had the lowest EHS use among all HSDAs and was at 50.0% or 17.9% below the provincial average. In contrast, the Central Vancouver Island (42) HSDA in Vancouver Island Health had the highest EHS use among all HSDAs and was at 73.1% or 5.2% above the provincial average. Phase B: The Impact of Mode of Transport to Hospital on Patient Receipt of Emergency Stroke Care in Northern British Columbia In Phase B, a comparison of EHS use for stroke across Northern Health, each of its three HSDAs (Northern Interior (52), Northwest (51), Northeast (53)), and each of the six facilities (University Hospital of Northern British Columbia (UHNBC) in Prince George, BC; G.R. Baker Memorial Hospital in Quesnel, BC; Mills Memorial Hospital in Terrace, BC; Prince Rupert Regional Hospital in Prince Rupert, BC; Fort St. John Hospital and Peace Villa in Fort St. John, BC; Dawson Creek and District Hospital in Dawson Creek, BC) in the region with neuroimaging capabilities is provided. Details on the demographic characteristics of the sample of stroke patients in each of these regions and findings on the receipt of emergency stroke care based on the mode of presentation to the ED and patient sex are also outlined. Finally, findings on predictors of EHS use among this population are presented. Northern Health The total number of cases meeting the inclusion criteria (primary diagnosis of stroke based on ICD 10 (I60-69), the patient was at least 18 years of age, and the patient presented through the ED between January 2015 to December 2018) was N=784. Across the Northern EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 165 Health region cohort of six facilities, the average age of stroke patients was 69.7 (+ 14.0) years and 42.7% (n=335/784) were female. Across the included sites in Northern Health, 60.6% (n=475/784) presented via EHS. Ischemic stroke accounted for 61.7% of all strokes (n=484/784), 15.2% were hemorrhagic (n=119/784), and a further 23.1% (n=181/784) were documented as unknown or unconfirmed diagnoses. All sites had CT imaging capability, while both the UHNBC and G.R. Baker Memorial Hospital had CT and MRI imaging. On average 94.1% (n=738/784) of patients had neuroimaging completed within 24 hours of presentation across the region. The administration of thrombolysis was 19.4% (n=94/484) for patients with confirmed ischemic stroke. Of all patients with stroke, hypertension and diabetes were the most prevalent of the stroke risk factors. Diabetes was reported in 29.2% (n=229/784), hypertension was reported in 33.3% (n=261/784) of those with stroke, while 91 patients were documented as having both diabetes and hypertension. Across Northern Health, 51.7% (n=405/784) of patients were discharged home from the hospital. Finally, a prescription for antithrombotics was received in 48.2% (n=378/784) of patients upon discharge from the hospital. Northern Interior HSDA. The Northern Interior (NI) HSDA includes the University Hospital of Northern BC (UHNBC) in Prince George, BC, and the G.R. Baker Memorial Hospital in Quesnel, BC. Both facilities have CT and MRI imaging capabilities and collectively serve the largest population within Northern Health. The NI HSDA accounted for 46.1% (n=361/784), the largest percentage of stroke incidence across the included Northern Health sites from 2015 to 2018. This HSDA had the oldest average age of stroke patients at 70.3 (+ 14.3). The NI HSDA also had the lowest percentage of females with stroke at 41.3% (n=149/361). The use of EHS was 64.5% (n=233/361), the highest across EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 166 HSDAs. Ischemic stroke accounted for 66.8% (n=241/361) of all stroke cases, 16.9% (n=61/361) were hemorrhagic, and 16.3% (n=59/361) were documented as unknown or unconfirmed diagnosis. The percentage of patients with the completion of neuroimaging within 24 hours of ED presentation was the lowest in this HSDA at 92.8% (n=335/361). Similarly, the thrombolysis rate for patients with confirmed ischemic stroke was also the lowest in this HSDA at 11.2% (n=27/241). Among those with stroke in this region, hypertension and diabetes were the most prevalent of the stroke risk factors. Diabetes was reported in 31.3% (n=113/361) of those with stroke and hypertension in 32.1% (n=116/361), while 38 patients reported both diabetes and hypertension. The NI HSDA had the highest percentage of patients discharged home at 55.1% (n=199/361). Finally, the percentage of patients receiving an antithrombotic prescription upon discharge was highest in this HSDA at 50.1% (n=181/361). Northwest HSDA. The Northwest (NW) HSDA includes Mills Memorial Hospital in Terrace, BC, and the Prince Rupert Regional Hospital in Prince Rupert, BC. The NW HSDA accounted for the second-highest percentage of stroke incidence at 29.2% (n=229/784) across the included Northern Health HSDAs from 2015 to 2018. This HSDA had the youngest average age of stroke patients at 68.7 (+ 13.0) years. The NW HSDA had the highest percentage of females with stroke at 45.0% (n=103/229). The use of EHS in this HSDA was the lowest across HSDAs at 53.7% (n=123/229). In the NW HSDA, 67.2% (n=154/229) of all stroke cases were ischemic, 14.8% (n=34/229) were hemorrhagic, and 17.9% (n=41/229) were documented as unknown or unconfirmed diagnoses. The percentage of patients with the completion of neuroimaging within 24 hours of ED presentation was highest in this HSDA at 96.1% (n=220/229). The administration of thrombolysis for patients with confirmed ischemic EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 167 stroke in this HSDA was 24.7% (n=38/154). Among those with stroke in this region, hypertension and diabetes were the most prevalent of the stroke risk factors. Diabetes was reported in 28.4% (n=65/229). Of note, the NW HSDA had the highest percentage of patients with reported hypertension at 41.0% (n=94/229), while 38 patients reported both diabetes and hypertension. The NW HSDA had the lowest percentage of patients discharged home across HSDAs at 46.7% (n=107/229). Finally, a prescription for antithrombotics was received in 47.2% (n=108/229) of patients upon discharge from the hospital in this HSDA. Northeast HSDA. The Northeast (NE) HSDA includes Fort St. John Hospital and Peace Villa in Fort St. John, BC, and the Dawson Creek and District Hospital in Dawson Creek, BC. The NE HSDA accounted for the smallest percentage of stroke incidence at 24.7% (n=194/784) across the included Northern Health sites from 2015 to 2018. In this HSDA, 61.3% (n=119/194) of patients presented via EHS. Ischemic stroke accounted for 45.9 % (n=89/194) of all stroke cases and 12.4% (n=24/194) were hemorrhagic. The NE HSDA had the highest percentage of strokes documented as unknown at 41.8% (n=81/194) across HSDAs. Neuroimaging was completed in 94.3% (n=183/194) of patients within 24 hours of presenting to the ED. The administration of thrombolysis in this HSDA was 32.6% (n=29/89) for patients with confirmed ischemic stroke. Among those with stroke, diabetes and hypertension were the most prevalent of the stroke risk factors documented. Both diabetes and hypertension were reported in 26.3% (n=51/194) of those with stroke, while 15 patients reported both diabetes and hypertension. In the NE HSDA 51.0% (n=99/194) were discharged home. Finally, the percentage of patients receiving an antithrombotic prescription upon discharge was the lowest in this HSDA at 45.9% (n=89/194). EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 168 Summary of HSDAs. Across the HSDAs differences in EHS use for stroke were ranged from 53.7% (n=123/229) in the NW to 64.5% (n=233/361) in the NI HSDA (p=0.03). The percentage of confirmed and unknown strokes between sites and ranged from 58.2% (n=113/194) confirmed in the NE HSDA to 83.7 % (n=302/361) confirmed in the NI HSDA (p<0.001). Neuroimaging was lowest in the NI HSDA at 92.8% (n=335/361) and highest in the NW HSDA at 96.1% (n=220/229) (p=0.26). The administration of thrombolysis for patients with confirmed ischemic stroke ranged from 11.2% (n=27/241) in the NI HSDA to 32.6% (n=29/89) in the NE HSDA. Finally, the prescription of antithrombotics upon discharge ranged from 45.9% (n=89/194) in the NE HSDA to 50.1% in the NI HSDA (n=181/258) (p=0.59). A more detailed overview of the entire sample of stroke cases for each HSDA is provided in Table 7. This is followed by a breakdown of patient population demographics, characteristics, and stroke care indicators by health facility. 42.7 (335) 57.3 (449) 60.6 (475) 39.4 (309) 76.9 (603) 61.7 (484) 15.2 (119) 23.1 (181) 94.1 (738) 5.9 (46) Admit by EHS Non-EHS Stroke type Confirmed Ischemic Hemorrhagic Unknown Neuroimaging within 24hr Yes No 69.7 (+14.0) 33.0 (259) 67.0 (525) Sex Female Male Age (µ+SD) <65 years >65 years (N=784) Total 92.8 (335) 7.2 (26) 83.7 (302) 66.8 (241) 16.9 (61) 16.3 (59) 64.5 (233) 35.5 (128) 41.3 (149) 58.7 (212) 70.3 (+14.3) 32.7 (118) 67.3 (243) 96.1 (220) 3.9 (9) 82.1 (188) 67.2 (154) 14.8 (34) 17.9 (41) 53.7 (123) 46.3 (106) 45.0 (103) 55.0 (126) 68.7 (+13.0) 33.2 (76) 66.8 (153) 94.3 (183) 5.7 (11) 58.2 (113) 45.9 (89) 12.4 (24) 41.8 (81) 61.3 (119) 38.7 (75) 42.8 (83) 57.2 (111) 69.6 (+14.2) 33.5 (65) 66.5 (129) Health Service Delivery Area Northern Interior Northwest Northeast (52) (51) (53) 46.1 (n=361) 29.2 (n=229) 24.7 (n=194) 0.26 <0.001 0.03 0.68 0.98 p-value Stroke Across Northern Health based on Emergency Stroke Admissions from the Canadian Institute for Health Information Stroke Special Project 340 from January 2015 to December 2018 (N=784) Table 7 EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 169 29.2 (229) 33.3 (261) 51.7 (405) 48.3 (379) 5.0 (39) 3.8 (30) 1.0 (8) 9.9 (78) 11.6 (91) 15.9 (125) 1.0 (8) 48.2 (378) 51.8 (406) 18.5 (145) 24.1 (189) 9.2 (72) Past medical history Diabetes mellitus Hypertension Discharge disposition Home Not home Long-term care Hospice Tier 3B site1 Tier 4 site2 OAI site3 Died Left against medical advice Antithrombotic prescription upon discharge Received Not received Not received but eligible Not eligible Unknown 50.1 (181) 49.9 (180) 15.2 (55) 28.8 (104) 5.8 (21) 55.1 (199) 44.9 (162) 6.1 (22) 8.3 (30) 0.8 (3) 6.9 (25) 3.9 (14) 17.5 (63) 1.4 (5) 31.3 (113) 32.1 (116) 8.0 (29) 7.5 (27) 0.5 (2) 92.0 (332) 2 1 Tier 3B= St. Paul’s, Kelowna General, Surrey Memorial, Nanaimo, Lions Gate, Grand Prairie AB as per PSC criteria. (Appendix A) Tier 4= Royal Columbian, Vancouver General, Victoria, Edmonton AB, Calgary AB as per CSC criteria. (Appendix A) 3 OAI= Other acute inpatient facilities. (Appendix A) 15.4 (121) 12.0 (94) 3.4 (27) 84.6 (663) Administration of thrombolysis Thrombolysis received Ischemic stroke Unknown stroke Not received 47.2 (108) 52.8 (121) 16.2 (37) 17.0 (39) 19.7 (45) 46.7 (107) 53.3 (122) 3.5 (8) 0 (0) 0.9 (2) 15.3 (35) 21.4 (49) 11.4 (26) 0.9 (2) 28.4 (65) 41.0 (94) 19.7 (45) 16.6 (38) 3.1 (7) 80.3 (184) 45.9 (89) 54.1 (105) 27.3 (53) 23.7 (46) 3.1 (6) 51.0 (99) 49.0 (95) 4.6 (9) 0 (0) 1.5 (3) 9.3 (18) 14.4 (28) 18.6 (36) 0.5 (1) 26.3 (51) 26.3 (51) 24.2 (47) 14.9 (29) 9.3 (18) 75.8 (147) 0.59 0.14 0.44 0.01 <0.001 EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 170 EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 171 Emergency Health Service Use for Stroke by Facility At the onset of this study, six out of the 18 acute care facilities in the Northern Health region, were able to provide emergency stroke care, including neuroimaging and thrombolytic therapy. Emergency health service use across these facilities ranged from 51.4% (n=37/72) at Prince Rupert Regional Hospital to 67.3% (n=200/297) at the UHNBC. Notably, each facility was below the 67.9% provincial average of EHS use for stroke. A more detailed overview of the EHS use for stroke by facility follows. University Hospital of Northern British Columbia. The UHNBC in Prince George, BC, is the largest hospital within the Northern Health Authority and has both CT and MRI imaging capabilities. The UHNBC accounted for the greatest percentage of the stroke incidence across the included sites in Northern Health at 37.9% (n=297/784). The average age of the stroke patient population was 69.6 (+ 14.7) years and 40.1% (n=119/297) of the population was female. The use of EHS was highest for patients presenting to UHNBC at 67.3% (n=200/297) as compared to other facilities. Ischemic stroke accounted for 66.0% (n=196/297) of all stroke cases, 18.2% (n=54/297) were hemorrhagic, and 15.8% (n=47/297) were documented as unknown or unconfirmed. The UHNBC had the highest rate of neuroimaging completion relative to other facilities at 96.3% (n=286/297). The administration of thrombolysis for patients with confirmed ischemic stroke was 13.3% (n=26/196), while two patients received thrombolysis before being transferred to the UHNBC from an outlying facility in the region. In this population hypertension and diabetes were the most prevalent of the stroke risk factors collected. Diabetes was reported in 30.3% (n=90/297), hypertension was reported in 31.0% (n=92/297), and both hypertension and diabetes were reported in 29 patients. At UHNBC 55.2% (n=164/297) of patients were EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 172 discharged home. Finally, 49.2% (n=146/297) received an antithrombotic prescription upon discharge. G.R. Baker Memorial Hospital. The G.R. Baker Memorial Hospital in Quesnel, BC has both CT and MRI imaging capabilities. G.R. Baker accounted for the smallest percentage of the stroke incidence across the included sites in Northern Health at 8.2% (n=64/784). This facility had the oldest average age of stroke patients at 73.6 (+ 12.7) years, and 46.9% (n=30/64) of the population was female. The primary mode of presentation to the ED was via EHS at 51.6% (n=33/64). The G.R. Baker Memorial Hospital had the lowest percentage of documented hemorrhagic stroke at 10.9% (n=7/64), while ischemic stroke accounted for 70.3% (n=45/64) of all stroke cases, and 18.8% (n=12/64) were documented as unknown or unconfirmed. The completion of neuroimaging was lowest here across all sites at 76.6% (n=49/64). Similarly, G.R. Baker Memorial Hospital had the lowest rate of thrombolysis for patients with confirmed ischemic stroke relative to other facilities at 2.2% (n=1/45). In this population hypertension and diabetes were the most prevalent of the stroke risk factors collected. This facility had the highest percentage of patients with reported diabetes 35.9% (n=23/64). Hypertension was reported in 37.5% (n=24/64) of those with stroke and nine patients reported both diabetes and hypertension. There were 54.7% (n=35/64) patients discharged home. Finally, the prescription of antithrombotics was the highest at the G.R. Baker Memorial Hospital with 54.7% (n=35/64) of patients receiving an antithrombotic prescription upon discharge. Mills Memorial Hospital. The Mills Memorial Hospital in Terrace, BC has CT imaging capabilities. Mills Memorial accounted for 20.0% (n=157/784) of the stroke incidence across the included sites in Northern Health. The average age of those with stroke EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 173 was the youngest among all facilities at 68.6 (+ 12.8) years and 43.9% (n=69/157) of the population was female. The primary mode of presentation to the ED was via EHS at 54.8% (n=86/157). Ischemic stroke accounted for 66.2% (n=104/157) of all stroke cases, 12.1% (n=19/157) were hemorrhagic, and 21.7% (n=34/157) were documented as unknown or unconfirmed diagnoses. Neuroimaging completion within 24 hours of ED presentation was at 96.2% (n=151/157). The administration of thrombolysis was 31.7% (n=33/104) for patients with confirmed ischemic stroke. In this population, hypertension and diabetes were the most prevalent of the stroke risk factors collected. Diabetes was reported in 28.0% (n=44/157), hypertension was reported in 38.2% (n=60/157) of those with stroke, and both hypertension and diabetes were reported in 24 patients. At Mills Memorial Hospital 47.1% (n=74/157) of patients were discharged home. Finally, 52.9% (n=83/157) of patients received an antithrombotic prescription upon discharge. Prince Rupert Regional Hospital. The Prince Rupert Regional Hospital in Prince Rupert, BC has CT imaging capabilities. Prince Rupert Regional Hospital accounted for 9.2% (n=72/784) of the stroke incidence across the included sites in Northern Health. The average age of the stroke patient population in this area was 69.0 (+ 13.5) years and 47.2% (n=34/72) of the population was female. The use of EHS was 51.4% (n=37/72) and was lowest for patients presenting to the Prince Rupert Regional Hospital compared to other facilities. Prince Rupert Regional Hospital had the lowest percentage of cases documented as unknown or unconfirmed diagnoses at 9.7% (n=7/72), while 69.4% (n=50/72) were ischemic, and 20.8% (n=15/72) were hemorrhagic. Neuroimaging was completed in 95.8% (n=69/72) of patients within 24 hours of ED arrival. The administration of thrombolysis for patients with confirmed ischemic stroke was 8.0% (n=4/50), while one patient received thrombolysis EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 174 before being transferred to Prince Rupert Regional Hospital from an outlying facility in the region. In this population hypertension and diabetes were the most prevalent of the stroke risk factors collected. Diabetes was reported in 29.2% (n=21/72). The percentage of patients with hypertension was highest than in populations from the other facilities and was reported in 47.2% (n=34/72) of those with stroke. Both diabetes and hypertension were reported in 14 patients. At the Prince Rupert Regional Hospital, 45.8% (n=33/72) of patients were discharged home. Finally, 34.7% (n=25/72) of patients received an antithrombotic prescription upon discharge. Fort St. John Hospital and Peace Villa. The Fort St. John Hospital and Peace Villa in Fort St. John, BC has CT imaging capabilities. The Fort St. John Hospital and Peace Villa accounted for 15.3% (n=120/784) of the stroke incidence across the included sites in Northern Health. The average age of the stroke patient population in this area was 68.7 (+ 14.9) years and this facility had the lowest percentage of females with stroke 36.7% (n=44/120). The primary mode of presentation to the ED was via EHS at 64.2% (n=77/120). Ischemic stroke accounted for 50.8% (n=61/120) of all strokes, 11.7% (n=14/120) were hemorrhagic, and 37.5% (n=45/120) were documented as unknown or unconfirmed diagnoses. Neuroimaging was completed in 93.3% (n=112/120) of patients within 24 hours of ED arrival. The administration of thrombolysis for patients with confirmed ischemic stroke was 27.9% (n=17/61). In this population hypertension and diabetes were the most prevalent of the stroke risk factors collected. Diabetes was reported in 29.2% (n=35/120), hypertension was reported in 35.0% (n=42/120) of those with stroke, and both diabetes and hypertension were reported in 14 patients. This facility had the highest percentage of patients EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 175 discharged home from the hospital at 57.5% (n=69/120). Finally, 54.2% (n=65/120) of patients received an antithrombotic prescription upon discharge. Dawson Creek and District Hospital. The Dawson Creek and District Hospital in Dawson Creek, BC has CT imaging capabilities. Dawson Creek and District Hospital accounted for 9.4% (n=74/784) of the stroke incidence across the included sites in Northern Health. The average age of the stroke patient population in this area was 71.1 (+ 12.8) years and this facility had the highest percentage of females with stroke 52.7% (n=39/74). The primary mode of presentation to the ED was via EHS at 56.8% (n=42/74). The percentage of patients with ischemic stroke was the lowest at this facility with 37.8% (n=28/74), while 13.5% (n=10/74) were hemorrhagic stroke. Notably, 48.6% (n=36/74) of strokes were documented as unknown and this was the highest percentage among all included facilities. Neuroimaging was completed in 95.9% (n=71/74) of patients within 24 hours of ED presentation. The administration of thrombolysis was highest at the facility for patients with confirmed ischemic stroke at 42.9% (n=12/28). In this population diabetes and hypertension were the most prevalent of the stroke risk factors collected. This facility had the lowest percentage of patients with reported diabetes and hypertension at 21.6% (n=16/74) and 12.2% (n=9/74) respectively, while one patient reported both diabetes and hypertension. The Dawson Creek and District Hospital had the lowest percentage of patients discharged home from the hospital at 40.5% (n=30/74). The prescription of antithrombotics upon discharge was lowest at this facility with 32.4% (n=24/74) of patients receiving an antithrombotic prescription upon discharge. Summary of Facilities. Across the included Northern Health facilities, there were statistically significant differences in EHS use for stroke ranging from 51.4% (n=37/72) at EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 176 the Prince Rupert Regional Hospital to 67.3% (n=200/297) at the UHNBC (p=0.02). Differences between the percentage confirmed strokes between facilities ranged from 51.4% (n=38/74) at the Dawson Creek and District Hospital to 90.3% (n=65/72) at the Prince Rupert Regional Hospital (p<0.001). There was variability in the completion of neuroimaging between facilities which ranged from 76.6% (n=49/64) at the G.R. Baker Memorial Hospital to 96.3% (n=286/297) at the UHNBC. The administration of thrombolysis for patients with confirmed ischemic stroke between facilities ranged from 2.2% (n=1/45) at the G.R. Baker Memorial Hospital to 42.9% (n=12/28) at the Dawson Creek and District Hospital. Finally, there were differences in the rate of antithrombotic prescription upon discharge ranging from 32.4% (n=24/58) at the Dawson Creek and District Hospital to 54.7% (n=35/64) at the G.R. Baker Memorial Hospital (p=0.01). A detailed overview of the entire sample of stroke cases for each facility is provided in Table 8. 40.1 (119) 59.9 (178) 67.3 (200) 32.7 (97) 84.2 (250) 66.0 (196) 18.2 (54) 15.8 (47) 96.3 (286) 3.7 (11) Admit by EHS Non-EHS Stroke type Confirmed Ischemic Hemorrhagic Unknown Neuroimaging within 24 hours Yes No 69.6 (+14.7) 34.0 (101) 66.0 (196) Sex Female Male Age (µ+SD) <65 years >65 years University Hospital of Northern British Columbia (UHNBC) 37.9 (n=297) 76.6 (49) 23.4 (15) 81.3 (52) 70.3 (45) 10.9 (7) 18.8 (12) 51.6 (33) 48.4 (31) 46.9 (30) 53.1 (34) 73.6 (+12.7) 26.6 (17) 73.4 (47) 8.2 (n=64) G.R. Baker Memorial Hospital 96.2 (151) 3.8 (6) 78.3 (123) 66.2 (104) 12.1 (19) 21.7 (34) 54.8 (86) 45.2 (71) 43.9 (69) 56.1 (88) 68.6 (+12.8) 30.6 (48) 69.4 (109) 95.8 (69) 4.2 (3) 90.3 (65) 69.4 (50) 20.8 (15) 9.7 (7) 51.4 (37) 48.6 (35) 47.2 (34) 52.8 (38) 69.0 (+13.5) 38.9 (28) 61.1 (44) Health facility Mills Prince Memorial Rupert Hospital Regional Hospital 20.0 (n=157) 9.2 (n=72) 93.3 (112) 6.7 (8) 62.5 (75) 50.8 (61) 11.7 (14) 37.5 (45) 64.2 (77) 35.8 (43) 36.7 (44) 63.3 (76) 68.7 (+14.9) 35.8 (43) 64.2 (77) 15.3 (n=120) Fort St. John Hospital and Peace Villa 95.9 (71) 4.1 (3) 51.4 (38) 37.8 (28) 13.5 (10) 48.6 (36) 56.8 (42) 43.2 (32) 52.7 (39) 47.3 (35) 71.1 (+12.8) 29.7 (22) 70.3 (52) Dawson Creek and District Hospital 9.4 (n=74) Stroke Across Northern Health Facilities with Neuroimaging Based on Emergency Stroke Admissions from the Canadian Institutes for Health Information Stroke Special Project 340 from January 2015 to December 2018 (N=784) Table 8 EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 177 - <0.001 0.02 0.24 0.60 p-value 30.3 (90) 31.0 (92) 55.2 (164) 44.8 (133) 5.7 (17) 10.1 (30) 0.7 (2) 7.1 (21) 2.7 (8) 17.2 (51) 1.3 (4) 49.2 (146) 50.8 (151) 16.8 (50) 29.6 (88) 4.4 (13) Past medical history Diabetes mellitus Hypertension Discharge disposition Home Not home Long-term care Hospice Tier 3B site1 Tier 4 site2 OAI site3 Died Left against medical advice Antithrombotic prescription upon discharge Received Not received Not received but eligible Not eligible Unknown 54.7 (35) 45.3 (29) 7.8 (5) 25.0 (16) 12.5 (8) 54.7 (35) 45.3 (29) 7.8 (5) 0 (0) 1.6 (1) 6.3 (4) 9.4 (6) 18.8 (12) 1.6 (1) 35.9 (23) 37.5 (24) 3.1 (2) 1.6 (1) 1.6 (1) 96.9 (62) 52.9 (83) 47.1 (74) 14.6 (23) 17.2 (27) 15.3 (24) 47.1 (74) 52.9 (83) 1.3 (2) 0 (0) 0 (0) 14.0 (22) 23.6 (37) 12.7 (20) 1.3 (2) 28.0 (44) 38.2 (60) 26.1 (41) 21.0 (33) 5.1 (8) 73.9 (116) 34.7 (25) 65.3 (47) 19.4 (14) 16.7 (12) 29.2 (21) 45.8 (33) 54.2 (39) 8.3 (6) 0 (0) 2.8 (2) 18.1 (13) 16.7 (12) 8.3 (6) 0 (0) 29.2 (21) 47.2 (34) 5.6 (4) 5.6 (4) 0 (0) 94.4 (68) 54.2 (65) 45.8 (55) 19.2 (23) 25.0 (30) 1.7 (2) 57.5 (69) 42.5 (51) 5.0 (6) 0 (0) 0.8 (1) 7.5 (9) 10.0 (12) 18.3 (22) 0.8 (1) 29.2 (35) 35.0 (42) 18.3 (22) 14.2 (17) 4.2 (5) 81.7 (98) 32.4 (24) 67.6 (50) 40.5 (30) 21.6 (16) 5.4 (4) 40.5 (30) 59.5 (44) 4.1 (3) 0 (0) 2.7 (2) 12.2 (9) 21.6 (16) 18.9 (14) 0 (0) 21.6 (16) 12.2 (9) 33.8 (25) 16.2 (12) 17.6 (13) 66.2 (49) Note: cell size too small for calculation of chi-square at facility level for neuroimaging 1 Tier 3B= St. Paul’s, Kelowna General, Surrey Memorial, Nanaimo, Lions Gate, Grand Prairie AB as per PSC criteria. (Appendix A) 2 Tier 4= Royal Columbian, Vancouver General, Victoria, Edmonton AB, Calgary AB as per CSC criteria. (Appendix A) 3 OAI= Other acute inpatient facilities, including Tier 3B (St. Paul’s, Kelowna General, Surrey Memorial, Nanaimo, Lions Gate, Grand Prairie AB as per PSC criteria) and lower. (Appendix A) 9.1 (27) 8.8 (26) 0.3 (1) 90.9 (270) Administration of thrombolysis Thrombolysis received Ischemic stroke Unknown stroke Not received EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 178 0.01 0.10 0.59 <0.001 <0.001 EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 179 Mode of Hospital Arrival and Receipt of Stroke Care Indicators of stroke care, including the completion of neuroimaging within 24 hours of presentation to the ED, the administration of thrombolytic therapy, and the prescription of antithrombotics upon discharge were compared based on the patient’s mode of arrival to the hospital. Differences for the completion of neuroimaging and prescription of antithrombotics were not statistically significant based on the mode of hospital arrival. However, the proportion of patients to receive thrombolytic therapy differed by mode of arrival, Χ 2(1, N=121) = 0.90, p=0.04. Among patients with ischemic stroke, the administration of thrombolytic therapy was 20.8% (n=60/289) for those arriving by EHS compared to the 15.9% (n=31/195) who did not arrive by EHS. Sex-based Analysis for the Receipt of Stroke Care The receipt of stroke care using indicators, including neuroimaging, administration of thrombolytic therapy, and the prescription of antithrombotics was compared between sexes. Differences for the administration of thrombolytic therapy and the prescription of antithrombotics were not significant based on sex and the mode of hospital arrival. However, the proportion of those with neuroimaging within 24 hours of ED presentation differed by sex, Χ 2(1, N=784) = 2.70, p=0.001. Among males who received neuroimaging within 24 hours of hospital arrival (95.3%, n=428/449), there was no significant difference for the completion of neuroimaging for the 58.6% arriving by EHS (n=251/428) versus the 41.4% (n=177/428) arriving by non-EHS, Χ 2(1, N=449) = 0.53, p=0.46. However, among females who received neuroimaging within 24 hours of hospital arrival (92.5%, n=310/335), neuroimaging receipt was significantly higher among the 64.2% of females arriving by EHS EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 180 (n=199/310) versus the 35.8% (n=111/310) arriving by non-EHS, Χ 2(1, N=335) = 4.03, p=0.045. Predictors of EHS Use Binary logistic regression was used to test for predictors of EHS use for stroke (Table 9). Differences in EHS use were observed based on past medical history for hypertension at the bivariate level (i.e., chi-square test). However, these differences were not significant at the multivariate level and thus were removed from the model. Results indicated that the odds of using EHS were greater for those 65 years of age or older (OR 1.92; 95% CI 1.41-2.62, p<0.001) than those under the age of 65 and that the odds of using EHS for those in the NW HSDA were lower than those compared to the NI HSDA, (OR 0.50; 95% CI 0.30-0.86, p=0.01) (Χ2=34.89, df=8, and p=0.0001) Two other predictors tested, including sex and type of stroke were not significant. As stated in Chapter Three, the validity of the final logistic regression model was assessed using the Hosmer and Lemeshow Goodness-of-Fit test and the c-statistic was used to assess the discrimination and strength of the model (Field, 2013). The model correctly predicted 17.8% of cases where there was no EHS use, 90.9% of cases where there was EHS use, and overall correctly classified 62.1% of cases. This model with all four predictors only explained 5.9% (Nagelkerke R2) of the variance in EHS use with a cstatistic of 0.63. EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 181 Table 9 Binary Logistic Regression Model for Predictors of Emergency Health Service Use in Northern Health Based on Emergency Stroke Admissions from the Canadian Institutes for Health Information Stroke Special Project 340 from January 2015 to December 2018 (N=784) p-Value Variable OR (95% CI) (N=784) <65 years >65 years 1.0 1.92 (1.41-2.62) <0.001 Female Male 1.0 1.16 (0.88-1.56) 0.33 1.0 1.47 (0.95-2.26) 0.89 (0.62-1.28) 0.08 0.52 1.0 0.50 (0.30-0.86) 0.63 (0.37-1.08) 0.01 0.10 Age Sex Stroke type Ischemic Hemorrhagic Unknown Health service delivery area Northern Interior Northwest Northeast Note: OR=odds ratio, CI=confidence interval Hosmer and Lemeshow: Χ2=34.89, df=8, and p=0.0001, Classification rate 62.1%, Nagelkerke R2=0.059 Summary In conclusion, EHS use for stroke in BC was 67.9%, higher than the national average of 67.0% (Canadian Stroke Best Practices, 2018). There were notable geographic differences observed across the province based on regional health authority and HSDAs. For example, the use of EHS for stroke ranged from 58.8% in Northern Health to 70.2% in Fraser Health from January 2015 to March 2018. At the HSDA level, the use of EHS for stroke ranged from 50.0% in the Kootenay Boundary to 73.1% in Central Vancouver Island. Importantly, every HSDA in Vancouver Coastal Health and Northern Health had EHS use below provincial averages. In Phase B, EHS use for stroke in Northern Health across centers with neuroimaging capabilities was 60.6% from January 2015 to December 2018. Similar to provincial trends, differences were observed between each of the HSDAs, the Northern EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 182 Interior (52), the Northwest (51), and the Northeast (53), as well as variability between facilities with neuroimaging capabilities in this region. In Northern Health, the proportion of patients to receive thrombolytic therapy differed by mode of arrival, Χ2(1, N=121) = 0.90, p=0.04. Among patients with ischemic stroke, the administration of thrombolytic therapy was 20.8% (n=60/289) for those arriving by EHS compared to the 15.9% (n=31/195) who did not arrive by EHS. The proportion of those with neuroimaging within 24 hours of ED presentation also differed by sex, Χ2(1, N=784) = 2.70, p=0.001 with 92.5% (n=310/335) of females receiving neuroimaging within 24 hours of ED presentation compared to 95.8% (n=428/449) for males. Finally, the odds of using EHS were greater for those 65 years of age or older (OR 1.92; 95% CI 1.41-2.62, p<0.001) than those younger than 65 and the odds of using EHS were lower for those in the NW HSDA (OR 0.50; 95% CI 0.30-0.86, p=0.01) than those in the NI HSDA. In the next chapter, Chapter Five, the findings for Phase C of this research are outlined. In particular, key insights from the qualitative interviews conducted with patient and caregiver participants for seeking emergency medical care for acute stroke in northern BC are presented. It is hoped that this provides some contextual insights to highlight some of the key barriers and facilitators to initiating the use of emergency health services and helpseeking behaviors for stroke in the Northern Health region. EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 183 Chapter Five: Exploring the Decision-making Process for Seeking Emergency Care Among Stroke Survivors and their Caregivers in Northern British Columbia This chapter presents the findings for Phase C of this research. This qualitative phase of the research aimed to explore the decision-making processes of stroke survivors for seeking emergency medical care for acute stroke in northern BC. Caregivers were also able to partake if they were present at the time of the event and were involved in caring for the stroke survivor. A total of 12 semi-structured qualitative interviews with 19 participants, including stroke survivors, henceforth referred to as patient participants, (n=12) and their caregivers, henceforth referred to as caregiver participants (n=7), were undertaken. All 12 patient participants experienced first-time stroke and received stroke care at one of the six main hospitals in northern BC regardless of their first site of presentation. A demographic table for patient participants is presented in Table 10. While seven caregivers, six females and one male, also participated in the interviews, only patient participant demographics were collected. 74 M M F F F F F M M M M M P003 P004 P005 P006 P008 P010** P011* P013 P017* P018* P020* Retired Employed Employed Employed Retired Retired Retired Employed Selfemployed Employed Employed Retired Occupation NON-EHS EHS EHS EHS EHS NON-EHS EHS NON-EHS EHS EHS EHS Mode of hospital presentation EHS Ischemic Ischemic Ischemic Hemorrhagic Ischemic Ischemic Hemorrhagic Hemorrhagic Ischemic Ischemic Ischemic Ischemic Stroke type * caregiver present. Note: EHS-emergency health services, NON-EHS-other means of transport, including private car, taxi. Note: - = no prior medical history disclosed by patient participant. 63 59 66 44 67 65 60 54 44 41 23 Age Sex Patient participant ID P001* Patient Participant Interviewee Characteristics (n=12) Table 10 2018 2018 2017 2018 2019 2019 2016 2018 2015 2018 2018 2015 Date of stroke - - - - hypertension - - atrial fibrillation - hypertension, dyslipidemia - Medical history Dawson Creek Smithers Kitimat Prince George Prince George Vanderhoof Prince George Prince George Fort St. John Prince George Prince George Terrace Home site Dawson Creek Terrace Prince George, Vancouver Terrace Prince George Prince George Prince George Prince George Prince George, Vancouver Prince George Prince George Terrace Treatment site EMERGENCY HEALTH SERVICES UES FOR STROKE IN BRITISH COLUMBIA 184 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 185 Interviews were audio-recorded, transcribed, and analyzed using an iterative approach. Three core themes emerged from the analysis along with several important subthemes. These are summarized in Figure 12. These themes included the decision-making process involved in seeking emergency medical care, experiences of stroke care, and perceived gaps in care and areas in need of further support. Several sub-themes also emerged. For theme one, subthemes included knowledge gaps, perceived symptom seriousness, the impact of others, and an unwillingness to seek care. For theme two, sub-themes included prehospital care, in-hospital care. For the third theme, subthemes included mental health, rehabilitation, education, caregiver supports, and reflections on life post-stroke. Each of these is discussed. Figure 12 Themes and Subthemes from 12 Patient Participant and Seven Caregiver Participant Interviews (N=19) EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 186 Theme One: Decision-making Process for Seeking Emergency Medical Care A core focus of this research was to explore some of the contextual factors impacting the decision-making process for persons seeking emergency medical care for stroke in northern BC. During the interviews, both patient participants (denoted by their unique Patient participant ID) and caregiver participants (denoted by a C following the Patient participant ID) reflected upon their experience with stroke. Patient participants reflected on where they were when their symptoms started, the specific symptoms they experienced, the factors they considered when they were thinking of whether to seek medical care, including their transport methods for getting to the hospital, and their overall journey through the medical system. Caregiver reflections centred on the factors that they considered when thinking of whether to seek medical attention for their loved ones as well as their experience with the health system. When examining their decision-making during the period immediately following their stroke, patient participants described numerous factors that influenced their decision to seek care and call EHS providers. These factors included their level of stroke knowledge and F.A.S.T. awareness, their perceived seriousness of symptoms they experienced, and the impact of others around them, including having a caregiver or bystander present and acting out of concern for others. Similar to patient participants, caregiver participants also described factors such as their level of stroke knowledge and F.A.S.T. awareness as being an important factor in the decision to seek emergency medical care. However, some caregiver participants also reflected on how they established contact with primary care providers to assist in the decision-making process and others relied on their knowledge of local health resources, including the availability of EHS to decide on the best way to seek care. In addition to this, EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 187 many caregiver participants relied on their personal knowledge of the patient participant and knowing how there was something different about them, even if they did not immediately recognize this difference as being a stroke. Each of these factors influenced the decision to call EHS or to self-transport to the ED. Deciphering Symptoms Study participants, both patient participants and caregiver participants, sought to make sense of emerging symptoms, attempting to decipher potential causes and to determine whether or not to seek emergency care. Many patient participants recalled monitoring their symptoms before seeking help. Throughout the interviews, knowledge gaps specific to the recognition of stroke symptoms were commonly reported. The majority of patient participants recalled feeling confused about their symptoms during the immediate period following stroke. Some confused their symptoms with other conditions, such as a myocardial infarction or headache, while others recalled feeling uncertain about whether to wait to see if symptoms resolved, seek immediate emergency medical attention, or call EHS. More than half of the patient participants interviewed (n=7) did not think the symptoms they experienced, including those of speech challenges, confusion, and disorientation, were that of a stroke. As a result, many of these participants indicated that they acted to seek emergency medical attention based on the type of symptoms experienced or the length of time they experienced these symptoms, as opposed to acting due to the symptoms being indicative of stroke and recognizing that as a medical emergency. When reflecting upon the initial period following their stroke, some patient participants described that they did not feel that the symptoms they experienced were that of a stroke. As a result, many were confused about the cause of their symptoms, attributing EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 188 them to less serious conditions such as a headache. For example, Patient Participant Four, a female aged 41 years, reported some confusion and misinterpretation of symptoms. In this case, the patient participant associated these symptoms with myocardial infarction as opposed to stroke. They explained: And it didn’t seem like it was typical because everything you always read about always is on your left side, right? Where it all started in my right and it started off as like a tingle and then a little bit of visual like it, it was a gradual process. [P004] Interestingly, for Patient Participant Five, while there appeared to be some level of awareness of stroke symptoms a knowledge gap was still present. They explained that during the time they experienced their symptoms, they were working to try to decipher and make sense of what they were experiencing. While they initially were suspecting a stroke, this patient participant actively recalled checking for some of the classic stroke symptoms such as facial droop and an inability to move one’s limbs before calling for EHS care. They said: I just went upstairs, and I felt totally fine, I went upstairs and looked in the bathroom, looked in the mirror, and saw that my face wasn’t droopy and I could lift my hands above my head. So, I don’t know and I was thinking that I, I thought well it can’t be a stroke then because I feel fine and there’s nothing here, I just can’t talk…I know the warning like I know the warning signs but I just, I don’t know what I was thinking that was kind of some of the other confusion that was going on with me not feeling, feeling well. [P005] Another patient participant, who lived alone, recalled waking up with symptoms and reported relying on a ‘gut instinct’ as opposed to formal knowledge of stroke symptomology when deciding to get medical attention. They mentioned that while they did not know specifically know their auditory symptoms were stroke-related, they had an underlying feeling that they needed to get help. They explained: I woke up and again its, I mean I wasn’t sure what was happening...I just knew something bad was happening…And the main thing was actually there was a, there was a weird, it was like, like a sound thing like a, in my ears like I, like I, like holding up like the ocean. And it was five a.m. so its kind of quiet usually so that was the EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 189 main thing actually. And, yeah, I could kind of feel like I was, I wasn’t quite it was wrong. There was no pain or anything, I didn’t feel like that, I didn’t feel nauseous or dizzy or anything…I just knew that I had to get assistance. [P013] Similar uncertainties and knowledge gaps emerged from many of the caregiver participants (n=3), and this was another key factor that influenced the decision to seek help following a stroke. Like some of the patient participants, many of the caregiver participants also reported feeling confusion about symptoms, often attributing these to other less serious conditions. Through the process of deciphering and making sense of symptoms, participants attempted to determine how to respond and whether to seek emergency care. In some cases, caregiver participants similarly reported attempting to make sense of this, which in turn made them hesitant to seek urgent medical attention and delayed or prevented them from calling EHS for care. While some patient participants considered their symptoms to be more benign, such as a simple headache, caregiver participants often confused the symptoms experienced by patient participants for completely different conditions entirely, contributing to further delays in seeking prompt medical attention. For example, the patient participant, caregiver, and the patient participant's mother-in-law had been visiting a close friend in the hospital when Patient Participant 20’s initial symptoms began. In this case, prior personal experience emerged as an important factor for caregiver participants when attempting to make sense of stroke symptoms. The caregiver participant explained how they (caregiver and their mother) had interpreted the symptoms of dizziness and disorientation as being a sign of hypoglycemia, based on their prior experiences. They attempted to resolve these symptoms by addressing what they felt was low blood sugar with some food and said: And then we all went down the elevator and he was saying how, you know, he was disoriented and dizzy and I kind of laughed and said, well, you know, I’m dizzy all the time coming down an elevator, I, I didn’t take it seriously enough…We left and he thought he was hungry and as we’re crossing the street he said I’m not going to EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 190 make it to the other side of the street. So my mum and I helped him and at that point, my mum is a diabetic and we were thinking maybe really low blood sugar. [Participant020C] Other caregiver participants (n=3) also reported relying on their experiential knowledge when attempting to decipher symptoms. Having known others who had had a stroke was a helpful motivator when deciding to seek emergency medical care for some caregiver participants. As one participant, the caregiver of Patient Participant 10, mentioned: I knew immediately by the side face. And not being able to talk to me and just the look in her eyes I’ve seen several people that have had strokes…Or seizures and I knew the minute I looked at her that she was having a stroke. [P010C] Likewise, the caregiver participant of Patient Participant 11 recalled how they relied on their knowledge of their loved one’s usual personality to know something was different this time around. They recalled noticing a change in speech and described their experience as follows: Because P, P is a pretty good how do I put it, he’s a good drinker but when he drinks his voice doesn’t change a lot right? And I know this from like he lived in this house when I was sixteen but P and I have been friends for twenty-five years so I could just tell by his speech that it was a stroke. [P011C] Finally, the caregiver participant of Patient Participant 18 relied on their experience and knowledge as a healthcare professional and registered nurse to inform their actions. They said: I am a registered nurse so I do, I have worked in emergency so I knew right away that he was experiencing a stroke because he had just gone to the washroom and he was coming back to the bed and he just went down like not all the way down but he was like leaning over and his, um, left side was, was drooping and he was having slurred speech and his left eye was actually bulging and so I knew right away that he was having a stroke. [Participant018C] Knowledge gaps emerged in many forms throughout the analysis and were present even among those that reported having a good knowledge of stroke symptoms, including an awareness of high-profile public health campaigns like F.A.S.T. Three of the patient EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 191 participants recalled evaluating their symptoms concerning F.A.S.T. during the immediate period following the onset of symptoms. However, some patient participants discounted their symptoms as they did not fit with these past experiences or their previous knowledge, including the specific criteria addressed in the F.A.S.T. campaign. This perceived disconnect between their symptoms and these campaigns created confusion and uncertainty when deciding on whether to seek EHS care. This process of deciphering symptoms deterred some from seeking timely help or calling for EHS. As Patient Participant Four commented: I’ve, you know, you see from all the commercials and from first aid and everything like the signs of a stroke but as it's happening to you at that moment it's all very confusing and like what’s happening, it’s just a sheer panic happening right? [P004] While there were gaps in knowledge and confusion around symptoms for some, other participants (both patient participants (n=2) and caregiver participants (n=3) identified that their awareness of stroke symptoms and F.A.S.T. served as a motivation for calling EHS. In particular, some participants made direct references to the media campaign and television advertisements put forth by the Heart and Stroke of Canada. For example, Patient Participant Eight, who suffered a hemorrhagic stroke, recalled how her headache prompted her to think what she was experiencing was a stroke. She recalled the experience as follows: “But those commercials on TV because I said to my husband ‘I think I’m having a stroke’… Yes, that, the worst headache of your life I remember that, and this was the worst headache of my life”. [P008] Similar experiences were reported by some of the caregiver participants as being an important factor in how they made sense of stroke symptoms and considered whether to seek help. For example, some caregiver participants (n=3) mentioned the F.A.S.T. television advertisements as being an important factor in their decision-making. In particular, the EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 192 recollection of these advertisements seemed to assist caregiver participants in recognizing the symptoms of a stroke. For instance, the caregiver participant of Patient Participant One, who was also a healthcare professional, explained that they were aware of stroke because of their own experience in caring for persons following stroke. However, they said it was the television commercials on F.A.S.T. which prompted them to seek immediate emergency care. They said: …if it hadn’t been for the ads on the TV about the heart and stroke signs I wouldn’t have caught, I really wouldn’t because he started slurring, he couldn’t lift his hand and the ad jumped into my head and I said P I think you’re having a stroke and just need to call 911 which I didn’t do right away. I called my daughter who then called 911 so, you know, there are moments there where you aren’t thinking very clearly but everything jumped into mind from one of those commercials, it's just amazing. [P001C] Similarly, the caregiver participant of Patient Participant 17 mentioned their recollection of the F.A.S.T. campaign and explained how that impacted their actions. They said: You know that commercial on TV...So I, yeah, I told him to lift his arm up and he could do one arm but he couldn’t do the other arm and then he, he got kind of garbled and his face didn’t really slant but he just didn’t look right so I went oh my god he’s really having a stroke and I had the cell phone in my hand because I was gonna shut it off…And so I got 911 and I got the ambulance here as quick as I could and I phoned my sons as quick as I could. [P017C] Perceived Seriousness and Duration of Symptoms While multiple factors influenced the decision of patient participants to seek emergency help, the perception of the seriousness of symptoms, including the duration of symptoms experienced, emerged as a common factor that impacted help-seeking behaviors. For patient participants who waited to seek care (n=4), and particularly among those who did not call for an EHS (n=2), the perception of the seriousness of symptoms was a major factor in deciding to seek care. In these situations, patient participants were seeking to make sense EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 193 of the seriousness of their symptoms. For example, Patient Participant Three commented on how vision loss promoted them to seek care. They said: I lost vision again (for the third time) so I kind of voluntarily put myself on the ground after rubbing myself down and sat down, got dressed, and again I lost all my vision. So, at that point, we said, okay, we should call an ambulance and see kind of what’s going on. [P003] Other patient participants (n=4) also reported a lack of perceived seriousness regarding the specific symptoms they experienced. They described how this resulted in a delay in seeking help. For example, Patient Participant Six explained their perception of their headache. They said: “And I said, well, I really would hate to go to the hospital for it's just a headache, right? And I said well let’s have some breakfast and let’s, let’s go to, to the emergency”. [P006] For other patient participants, the more serious the symptoms were deemed to be, the more likely they were to think it was important to seek emergency medical care. Symptoms, including vision and loss of motor function, were cited as a cause for concern among patient participants who did not immediately recognize the symptoms as stroke-related. For example, Participant Three commented on their vision loss and how they decided to seek care after losing vision more than once. They said: The fact that my vision loss had disappeared for so long so and I had so many different periods of time I think after the first time it disappeared, I thought oh gosh I must be dehydrated especially because my vision came back to me so I was like oh I must be just very dehydrated. So, I went and I can crash like a five hundred millimeter water bottle and I was like hydrate up quickly I guess. And then I lost my vision again, I lost my vision again and I was like, okay, something is not right. [P003] The loss of motor function was another symptom that some patient participants cited as being concerning, even if they did not think it was directly related to stroke. Patient Participant Four described how the initial tingling sensations in their limbs did not lead them to think they needed to see a doctor. Instead, it was the loss of their walking ability that was a EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 194 facilitating factor in seeking emergency medical attention. They said: “But once I couldn’t walk it was like, okay, this is pretty serious like, alright, let’s, let’s go, call an ambulance”. [P004] Finally, other patient participants like Patient Participant Six, who suffered a hemorrhagic stroke, described their awareness of F.A.S.T. and familiarity with common stroke symptoms. However, they also explained their uncertainty when evaluating their condition at the time of stroke in particular the perceived seriousness of their symptom of a headache. This patient participant described how they initially experienced a sudden onset of headache while attending a social gathering. Uncertain about its cause, they initially took some time to sit down, drink some water, and take a short walk outdoors. While headache can be a common sign and symptom of stroke, in this instance, the patient participant did not recognize this and recalled how this led to some uncertainty when evaluating their condition and deciding to seek help. Instead of seeking immediate medical attention at the onset of their headache, they took some time to collect themselves and monitor their symptoms before seeking emergency care. When they returned home later that same night and the headache persisted, they reported searching the Internet for advice and guidance on what to do for their headache. They said: And then I kind of Googled it and I seen what it was a migraine or a stress headache. And I didn’t even see it, that, you know, it could be possibly a stroke. I was just thinking it was a headache and not to call 911. And then I was just like, oh, it's just a headache I’ll take some aspirin and I’ll go to bed. But every night, every time I had woken up throughout the night it was there and it was just like, wow, this is not going away. [P006] The Influence and Impact of Others Another common theme that emerged when patient participants were asked about factors that may have influenced their decision-making about seeking emergency care was EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 195 the impact of others. For some, it was the presence of caregivers or bystanders, for others, it was a concern for the well-being of their loved ones, and still, others' decisions about seeking medical attention were guided by the advice of their primary care physician. The influence of others around them was sometimes a driving force to seek prompt medical attention and often determined whether they chose to present to the ED by EHS or other means of transportation. The presence of a caregiver or bystander also seemed to impact the decision to seek medical care as well as the decision to call for an EHS or drive. Patient participants who were not alone at the initial onset of symptoms relied on their caregivers to make the call on whether or not to seek medical attention. For example, in the case of Patient Participant Six, they (both the patient and caregiver) decided to drive to the hospital to seek care as opposed to calling for an EHS. The patient participant explained how having someone available to drive them, in combination with the lack of perceived seriousness of symptoms, was a deterrent to calling EHS. They said: Yes, my husband drove me, and like I say we’re a half an hour, we, we live out the west in [small remote area] so we’re about a half an hour out of town…Yeah, I, I was just thinking it was a headache and not to call 911, yeah, we didn’t, you know, we didn’t even think about it, it was like let’s just get in the car. My husband drove me right because he was here, if I was by myself I would never have drove and... And I would totally have called 911. [P006] For other participants, both patients and caregivers, (n=2), particularly those that lived at a distance from the hospital or outside of city limits, there was discussion around actively choosing not to use EHS, because they knew it would be faster to get the ED using private transportation. For example, as the caregiver of Patient Participant 10 explained, the decision of not calling for EHS was an active one, occurring in part due to their understanding and EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 196 familiarity with the context of their community, including the limited EHS supports available to them. They commented: I knew that it would be faster to just take her than to wait, we would probably be fifteen to thirty minutes to get an ambulance, uh, I [didn’t] know just what the procedure would be at the hospital but I knew she needed to be there. [P010C] In other instances, (n=2), caregiver participants and bystanders decided to call for EHS upon recognizing that the symptoms the patient was experiencing were of stroke. Not only did they recognize the symptoms of a stroke but they also understood the need to seek urgent emergency medical attention. For example, the caregiver of Patient Participant 17 stated: “Um, well you’re supposed to get help as fast as you can with a stroke right? … And so, I just called 911 that’s what you’re supposed to do right because I couldn’t do anything for him”. [P017C] One patient participant (n=1) recalled feeling motivated to call for emergency medical attention as a result of their concern for others. Patient Participant Four, a mother to a young child, who experienced a stroke during her pregnancy with her second baby, was motivated to seek help for that reason. As Patient Participant Four stated: For myself honestly, I wasn’t even concerned about myself I was concerned about (a) my baby and my daughter that was all I could think of… That’s all I kept saying like where, where is my daughter, where’s my daughter like and then my baby like save my baby like that’s the only thing that was really like on my mind and coming out of my mouth. [P004] One caregiver participant reflected on how they had decided to take their loved one to the hospital. Just before they drove to the hospital, they decided to call their primary care provider for advice. This decision ultimately led to a delay in them seeking medical attention at their local ED. They explained as follows: I got P sitting in the car and, and by then I’d actually phoned the doctor’s office and said, you know, this has just happened should I bring him by the doctor’s office or EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 197 emergency? And it was about three-thirty, four o’clock in the afternoon and she put me on hold and checked with P’s doctor and he said, oh, bring him in tomorrow morning. [P020C] Unwillingness to Seek Care For a minority of patient participants (n=2), there was a distinct decision made to not seek help. Reasons included not wanting to go to the hospital as a result of previous interactions with the healthcare system as well as financial concerns. In these instances, caregivers played an important role in trying to convince patients to seek medical care. For example, Patient Participant Five recalled how her husband, whose father had previously experienced a stroke, wanted to take her to the hospital when observing speech-related symptoms. The patient decided to wait and see if the symptoms resolved themselves, explaining that she was feeling a sense of fatigue from having had made a few visits recently to see family in the hospital. They said: “I didn’t feel a need and I didn’t want to go to the hospital. I’d been to the hospital probably three times...In the last six weeks but I didn’t want to go to the hospital that night”. [P005] Similarly, Patient Participant 11, who experienced an ischemic stroke, delayed seeking care for their symptoms due, in part, to financial concerns related to being on a fixed income. During this interview, the caregiver participant of Patient Participant 11 mentioned how the patient had been experiencing symptoms of tingling and fatigue. In this instance, the caregiver suggested the patient go for an eye exam but the patient participant opted to wait for their pension to come in so they were able to pay for the eye exam. While the patient participant waited to be able to seek help, they took a daily Aspirin upon the advice of their caregiver who advised this in their hopes of preventing a stroke. They recalled their experience as follows: EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 198 About a month later he had a tingling in his arm, and I didn’t want to leave him and but he refused to go see the doctor so I said well take an Aspirin at least for me… And then he had the tingle in his arm, and he also seemed more tired than normal. And so, we were gonna, we asked him to go to the doctor, he said no so we tried to talk him into going to get an eye exam. Because you can see a lot in an eye exam. And we told him that we would pay for it, but he wanted to wait until his pension came in, okay? So, I just told him to take an Aspirin a day until we get this straightened out because my fear was he was going to have a stroke. [P011C] Overall, both patient and caregiver participants reflected on their decision-making processes for seeking emergency care for stroke, including the decision on whether or not to call for an EHS. There were several barriers and facilitators identified, including knowledge gaps, perceived symptom seriousness, the impact of others on the decision-making process, and an unwillingness to seek care. Interestingly, in some cases, factors such as the impact of others, served as a barrier to seeking emergency care, while at other times it facilitated helpseeking behaviors. Theme Two: Experiences of Care When exploring their experiences of stroke, participants, both survivors and caregivers, commented upon their encounters with healthcare professionals during their medical journey. These encounters reflected experiences of both pre-hospital and in-hospital care. Interactions with emergency care providers, including EHS providers and frontline emergency staff, as well as hospital staff, including nurses, physicians, and other allied health professionals were discussed. Pre-hospital Care During the interviews, both patient and caregiver participants described at length their experience of pre-hospital care, in particular their experience of receiving care from EHS providers, during the immediate period following the onset of their stroke. When reflecting on these interactions, participants reported mixed perspectives. Four patient participants EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 199 described their satisfaction with EHS providers, highlighting their fast response and vital local knowledge. For example, the caregiver of Patient Participant 18, recalled: “The ambulance came right away, and we were just lucky because it’s a small community and the EHS paramedic knew where we lived because we live in a remote...Rural area that’s like sort of hidden”. [P018C] Another patient participant recalled their interaction with EHS providers while en route to the hospital. They described how they felt embarrassed about calling for an EHS, especially when their pain resolved before they even arrived at the ED. They recalled how the EHS providers made light of the situation, putting the participant at ease, and offering reassurance. Patient Participant Five explained as follows: So, it's kind of important though I went there and a funny thing, you know, on the way to the ambulance the pain quit, on the way to the hospital the pain quit. And the drivers were laughing because they said oh this happens all the time, it’s the magic ambulance. [P005] While examples of positive experiences were uncovered, three patient participants shared some negative experiences with their pre-hospital care. These included dissatisfaction with EHS response times and difficult interactions with EHS personnel. For example, Participant Three was a younger individual who experienced an ischemic stroke at their local recreational facility, commented on the time it took for EHS providers to arrive once the call for help was placed and that it was difficult for them to interact with EHS providers as they were uncertain about what was happening. They said: “An ambulance showed up after about forty-five minutes, became a little bit disoriented, and was very aware of what was occurring but wasn’t able to communicate and find out what was happening”. [P003] In addition to dissatisfaction with response times, other patient participants (n=2) and caregiver participants (n=2) recalled some more difficult experiences with EHS providers. In EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 200 particular, they commented on they perceived that their condition was not taken as seriously or was wrongly attributed to substance use. Patient Participant Eight, who self-identified as a person with Metis ancestry, commented on how they felt their symptoms were not perceived to be as serious as they should have been by EHS providers. They said: An ambulance came, assessed me, didn’t think it was important that nothing serious was happening, didn’t turn the lights on, or anything they just, probably had a headache from being at the dentist. And dropped me off at emergency, my blood pressure was extremely high, um, and the pain was horrible, I don’t remember talking to them or what they asked me. [P008] Patient Participant 11, who self-identified as someone of a lower-income background and reported regular alcohol consumption, was one of the participants who also recalled a challenging experience. Patient Participant 11 was found by their caregiver, a person they also shared a residence with, outside the home hours after experiencing symptoms of a stroke. Patient Participant 11’s caregiver, also a participant and a close friend of many years, recalled: I questioned myself a bit but I did let the ambulance drivers know that I was pretty sure it was a stroke. And, yeah, and the way they assumed and what they did right?... So, they said uh, they’d got him up and they, I said, I said I think he’s had a stroke and they said, no, he smells like alcohol and I said I still think he’s had a stroke and they said, no, and they grabbed him by the pants, the hips of his pants one on each side and kind of just made him walk and dragged him that way… And even though even if he was drinking it doesn’t matter people should be treated. [P011C] Another patient participant, who lived alone, described their experience of living in a multi-family dwelling and experiencing a stroke in the early hours of the morning. They encountered a challenge when they called EHS, particularly when they were faced with having to take themselves to the front door of their apartment complex to let EHS providers in. They described how they went to the door despite having lost sensation in their legs and said: EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 201 Yeah, and then 911 which was funny too because when they got there, my apartment building… the operator asked me oh is there any chance you could open the door, I was like sure [laughing] so I crawled my way down the other way...It was good, I sort of propped my way up, opened up, and in they came. [P013] Finally, the caregiver of Patient Participant 17 highlighted the challenge of prehospital care in more rural settings. In this instance, the patient needed to be transported from a small community hospital to a larger centre that was capable of providing basic level stroke care, including neuroimaging and thrombolytics. They commented: “They tried to get an IV in him right the ambulance...And the road was pretty bumpy between in-between Kitimat and Terrace so they couldn’t do it”. [P017C] In-hospital Care While the core focus of this work was to explore the decision-making process associated with seeking emergency medical attention, including pre-hospital and emergency services, participants described at length their experiences of care from pre-hospital through discharge. When participants recollected their trajectory through hospital care, most patient participants (n=9) reported being discharged from the ED without ever being admitted to an acute care ward. One patient participant recalled his experience at the time of being triaged. Patient Participant Three, a younger male with no serious stroke risk factors and no prior history of stroke, commented on how it was uncomfortable when they were being questioned repeatedly on the consumption of alcohol concerning his symptoms, despite repeatedly denying use each time. This participant felt that they were concerned that their illness was not taken seriously and that their medical care was delayed as a result of repeated questioning. They explained as follows: “Initial kind of things were like I was asked three to five times if I had drank anything, like if I was drunk technically”. [P003] EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 202 Yet another caregiver participant expressed the challenges they encountered at the triage desk in the ED. Before arriving at the hospital, the caregiver of Patient Participant 20 had opted to go to a private MRI clinic to have the patient participant receive a timely scan. The caregiver participant recalled that they felt a sense of urgency when seeing the patient participant, an otherwise relatively healthy individual, experiencing balance and coordination issues that prevented them from carrying out basic daily tasks such as dressing. After seeing a physician in the clinic, they were told it would be a seven to ten-day wait for imaging under the public system, which was unacceptable to the caregiver participant. Feeling dismissed, the caregiver participant then decided to pay privately at a for-profit centre for a scan and upon receiving the report was advised to immediately proceed to the ED. Upon arrival at the hospital, they stated that: The triage nurse would not accept that he had a stroke and I said, you know, I’ve got the copy of the MRI in my purse do you want to look at it? And, uh, one of the one young interns walked by and said, you know, what’s happening? And she explained to the male nurse that, um, you know this could be a stroke and then things actually did happen relatively quickly. Um, the, the emergency doctor did see P right away, got some fluids into him, some, basically, at that point, all we’re doing is trying to stop the nausea. [P020] Another participant mentioned their challenges in accessing support for pain related to their stroke. Patient Participant Eight, who suffered a subarachnoid hemorrhage, experienced profound pain while in the ED and through their hospital stay. They felt their pain needs were inadequately managed and that the seriousness of their medical diagnosis was downplayed as a result of having a past history of substance use. This, despite two decades of sobriety, this participant recalled feeling interrogated concerning drug-seeking. They described their experience as follows: And, in fact, when after this emergency room doctor in the hospital told me I had a stroke and I was requesting my pain medication the next day and the nurse was giving EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 203 me a hard time she says your head shouldn’t be hurting this much and I said but I had a stroke, she said who told you had a stroke, you have a teeny tiny brain bleed like so dismissed my experience and had no idea. And so that was, um, that was, that was difficult, um, they don’t understand the pain element. [P008] Other patient and caregiver participants communicated positively about their experiences of receiving care in the ED. A stroke event can be an overwhelming experience and many participants highlighted the fact that they had difficulties following conversation or understanding what was happening to them. In such instances, the inclusion of family and caregivers, as well as having continuity in their care, provided a sense of reassurance. Both of Patient Participant 10’s caregivers, who were also family members, reflected on their experience in the ED during the interview. Patient Participant 10’s caregivers mentioned that they appreciated that the healthcare professionals in the ED were accommodating of having a family presence in the room. This appreciation was confirmed by Patient Participant 10 who nodded in agreement. The patient participant was transferred from a small community hospital to a larger facility for care. They said as follows: You know she just had that panicky look in her eyes and I think at that point I was the only one that she really recognized and, and then when we got into emerg I couldn’t believe it but the doctor, we had probably at least...Fifteen, sixteen people standing in the emerg with her, family and friends…And the nurse and the doctor were working and I said do you need us to leave so you can work and he said, oh no, he said we’ll work around you…Which was pretty cool I thought because in a situation like that the doctor might prefer that everybody is out of the way...But she would then worry about us and they knew it and we knew it…And she knew it and he just didn’t want anybody to leave and I thought that was very, very good of him. [P010C] Patient participants generally recalled little information about conversations with healthcare providers about treatment following a stroke, including the administration of thrombolytics. A small number of participants, mainly caregiver participants (n=3), mentioned conversations that were had around the decision regarding the administration of thrombolytic therapy. The caregiver participant of Patient Participant 17 reflected how they EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 204 found it surprising that the conversation surrounding informed consent for thrombolytic therapy was done with the patient who appeared to be in a state of confusion due to their stroke. They said: Well, no, because they had to do a CT scan on him first before they could give him that drug…And they asked [husband] which really surprised me because he was a little mixed up in his thinking, he was a little mixed up in his thinking and they didn’t wait for us, they talked to him and he said, look at, we have to get you this drug and they, [husband] said, okay, whatever you have to do… I was just surprised that they let him make the decision. [P017C] In contrast, one caregiver participant described being engaged in the conversation about stroke treatment. They said as follows: So when we got to emerg I was behind the ambulance…And they went through all the blood pressure, all the starting the IV’s and everything and I said do you think he’s had a stroke and they said well something is happening we have to do a CT scan right away…So they did a CT scan and then they said to P and I, you’ve got a clot there just let me get this right. It's not bleeding so we can do tPA and then they explained to us what the medication was and how it could bleed or it could help, you know, and time, time was of the essence. And then he made the decision quickly himself and I concurred with it that we’d go ahead with tPA and use whatever and take whatever benefit it was to us so then that was started. [P001C] Another caregiver participant recalled their experience about the process of deciding to go ahead with thrombolytic therapy. They recalled the coordinated efforts of emergency care providers and the specialty site to deliver care. In this instance, Patient Participant 10 resided in a small community where the local hospital could not perform neuroimaging nor administer thrombolytic therapy. After arriving at a hospital that was able to perform imaging and tPA, the emergency physician consulted with neuroradiology to decide on whether thrombolysis was an option. Despite the limited window of opportunity for the administration of tPA, this particular patient participant who sought prompt medical attention due to their caregivers' actions, was able to receive thrombolysis. The caregiver participant of Patient Participant 10 described the situation as follows: EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 205 After she got out of the CT they had to wait for the results to be read and then the doctor in emergency was conferring with Vancouver back and forth to try and decide because they couldn’t really decide exactly what was happening there wasn’t a clear clot that they could see, they knew something bad was happening but they didn’t know and so they didn’t know if they would prescribe tPA or not?. So it was a lot of limbo but by the time they decided to go ahead and do the tPA, there was still like twenty-five minutes to decide…Well, our doctor tells us she’s the first one that came from an outlying hospital to actually beat the deadline and get that shot...we’ve got fifteen minutes to decide I’m not sure, the doctor in Vancouver says yes give her the shot, he said how do you feel? And I looked at her I said how do you feel about it, she said yes…And I said yes and he said well that makes my decision pretty easy…They talked about percentages…He said I’ll go mix it up…And he said you know there is a ten percent chance that we could lose her when we give her the shot…And I said well, yeah…But I think of it right, it was the right decision, we knew we had a hundred percent chance of losing her…If she kept stroking, ten percent didn’t sound too bad at that time. [P010C] While most patient participants were discharged from the ED, some of them (n=4) were admitted as inpatients to receive ongoing stroke care. This included one patient participant that was transferred from a small community hospital to the regional centre, while two others were transferred from regional centres to a larger metropolitan hospital in Vancouver for specialty management and care. There was some reflection on their experiences related to this. One patient participant discussed at length about their complicated and difficult journey to get a diagnosis. Patient Participant Five said: And everything went away, and they had decided amongst themselves that I’d just taken too much over the weekend and I was crashing. But I first, I said no, that’s not true please call my cardiologist, there’s something that’s going on, we need to find out what’s going on now and I’m not going to leave and they said well you can go home, you’re fine. And I said I’m not leaving, and they said you’ll have to stay here until the internist comes in at five o’clock. I said well can you call my cardiologist and he’ll explain to you what I have going on…And they didn’t do that I had to wait for the internist to come…I was admitted seven days in ICU… they didn’t have a great discharge plan for me when they sent me home…And at that point, I still hadn’t been diagnosed with a stroke. [P005] Similarly, the caregiver participant of Patient Participant 20 also recollected their challenges in the quest for a diagnosis. They recalled actively weighing the potential risks EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 206 and balancing those with the expectations of a rural healthcare system where they faced challenges to receive timely neuroimaging in the publicly funded system. This led their caregiver to pay out of pocket for a scan at a private clinic. The caregiver described this experience as follows: I knew what my concerns were at that point and, um, the doctor said well we can, uh, we can check into that, I’ll get you an urgent MRI in a week to ten days and you’ll have to take him to Fort St. John’s. And I did say, you know what, in a week or ten days he’s going to be dead because like he’s worsening considerably every time this is happening and we, P and I both know that strokes can kill people, they can horribly disable people...And we were trying to at least preserve whatever function level P was at so, um, he referred us over to the private MRI clinic, I laid down my credit card and we had a diagnosis for P within a few hours, well we had the appointment in a few hours, we had the diagnosis while P was still on the table…And it was sent over to the radiologist, um, the doctor actually called me the next morning to confirm that it was a cerebella stroke and he would refer us to the neurologist in Prince George and that is pretty much, um, right after P’s MRI the MRI technician said you need to take him to emergency. [P020C] Advocacy When reflecting upon experiences of seeking help and navigating emergency healthcare, many participants discussed the need for support and advocacy during the immediate period following stroke. This illustrated the need for help to gather information, as well as the need for support to ensure patient-centred care. The caregiver participant of Patient Participant 20 recalled their quest for information seeking. They described that a key driver behind their advocacy efforts was their inability to get a clear diagnosis or receive adequate information from healthcare providers. They recalled having previously visited their primary care provider regarding Patient Participant 20’s neurological symptoms and were informed it was nothing serious. Not satisfied with this conclusion, the caregiver participant, who had a pre-existing relationship with the otolaryngologist, called to get an appointment for Patient Participant 20. Before heading into this appointment, fearing that the EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 207 symptoms would not be taken seriously by another healthcare provider. They actively gathered health information related to atypical stroke symptoms. The driver for this information seeking was already having a young family member experience similar symptoms years earlier who had eventually been diagnosed with a stroke. They described their experience as follows: We would not have gotten a diagnosis and I am, I’m very certain of that. A couple of things that got us the diagnosis, um, some experience with balance disorder in a family member...And, uh, call it Dr. Google, um, I’m not talking web MD, I’m talking looking up the actual scientific papers, review journals...And, uh, before we went to, the night before we went to the ear, nose and throat doctor I printed off about eight journal articles on, um, asymptomatic strokes or, um, straight I’m trying to think of the, um, oddball symptoms for strokes that get missed. [P020C] The second caregiver of Patient Participant 10 recalled their experience of needing to advocate in-hospital. They referenced their need to advocate for what they perceived as potential gaps in care. They discussed the constraints nursing and other staff faced concerning their workloads and how they were concerned that this can sometimes lead to things being missed. They said: We got really good care and any little tricky spots that we came to we were able to communicate about it and solve the problem, however, we still felt like somebody had to be at the hospital advocating for her almost the entire stay…It was also like even just her bathing stuff or for when she still had her feeding tube, and they were trying to transition and do the ice chips and stuff. The nurses and the other staff have so many things going on and all these patients so they weren’t like concentrating on everything that she was supposed to be getting so they would have her orders taped behind her bed . . .But they wouldn’t always look at that and so we just felt like we had to be there to make sure that all the things were happening that needed to. [P010C2] Both caregivers of Patient Participant 10, spouse and daughter, also discussed how advocacy helped with the overall recovery of their loved ones. In their instance, they felt that their ongoing attempts to seek information from healthcare providers and staff helped with EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 208 the flow of information, resulting in a perceived smoother care trajectory, and improved recovery for their family member. They said: I think because we were there and helped her recovery to be able to flow like it needed to flow and we always felt kind of bad because there were so many other patients that didn’t have somebody there advocating for them all the time and their recovery is a very different picture. [P010C and P010C2] Similarly, Patient Participant Eight also communicated the importance of advocacy and support during the immediate period following. They reflected on feeling the need for having to advocate for themselves and rely on others to do this for them during their stay in the hospital. They described their experience in the ED as follows: And dropped me off at emergency, my blood pressure was extremely high, um, and the pain was horrible, I don’t remember talking to them or what they asked me. I don’t remember arriving at the hospital I just remember sitting at the hospital bent over holding my head because of the pain. And my husband is not a big advocate, he doesn’t do well in those situations so I asked him to call my friend and she came and then by the, I don’t, she, she said we were there or something like three hours. [P008] The continuity of care and the need for ongoing communication was an important aspect that many (n=7) patients and caregiver participants discussed. Whether it was in the ED or an acute care ward, both participants with positive and negative experiences commented on different aspects of communication and care coordination. Some caregiver participants (n=2) reflected on their understanding of the “revolving door of practitioners” and that this made it challenging for them to have continuity of care. For example, a caregiver of Patient Participant 10 said: So that was another part where we felt like we need to advocate if we weren’t there to keep reminding therapists that is not going to work she damages the knee and then she can’t do therapy that’s not helpful so that was another time where we felt like we needed to be there because it was in her charts but...The message doesn’t always get broadcast to everyone because there’s so many care workers in and out…Like on second floor it was just rotating nurses, tons, and tons of different ones so we felt like we had to update everybody because...Charts didn’t always get read. [P010C2] EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 209 Similarly, Patient Participant Three also commented on the reality of multiple practitioners and carers. They felt that having a number of different providers added confusion to their time in the hospital and made for a more challenging care experience. They said: Concerning the care in emergency it was okay but it was also not consistent just because it was a revolving door kinda with practitioners and everything. I had my regular medical practitioner from Vancouver (stroke neurologist) he would check up on me but the nurse practitioners and everything was kind of like a revolving door. [P003] The flow of information in the hospital, beyond the ED, was also seen as a challenging aspect of their care by some patients and caregivers. The perceived disconnect between the sharing of medical information between the different medical units was viewed negatively and was seen to impact continuity of care. A caregiver participant of Patient Participant Ten offered a potential solution to the issue of information flow based on their experiences. They said: Well, the one thing that I noticed through the whole process was the information making it from one floor to the other and everybody being clear on it when a patient is moved say from...Down to rehab or from ICU to a [medical unit] it's like, it’s a whole different world...And that information should be told to everybody in my opinion on that floor that has anything to do with whoever is in charge on that shift and it should go on the chart…because it revolving door with, with aide givers and nurses and new doctors. [P010C] While some patient participants discussed the challenges they experienced when receiving emergency care for stroke in the ED, other patient and caregiver participants recalled more positive aspects about their in-hospital experiences (n=3). Some commented on how they felt coordination among professionals was important and provided a sense of continuity and connectedness. The caregiver participant of Patient Participant One recalled about their experience of team coordination as follows: EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 210 And it seemed to all happen very quickly and very efficiently it seemed like, you know, everybody in that ED seemed to know their job which was looking back it's just amazing and to me was very comforting actually at the moment because it's out of your hands so just standing watching it was, um, it was amazing to watch. [P001C] While most participants (n=8) received their care for stroke in the ED, others were admitted to acute inpatient wards and reflected on the care received. For example, Patient Participant Six recollected their experience of being admitted to the Intensive Care Unit. They described the experience of their interactions with different healthcare professionals, including nurses and physicians, outside of the ED. Then I went up to I, because I went up to ICU about, um, about six o’clock or seven o’clock at night...The ICU nurses were really good too, they were, you know, it was, it was, I don’t know they, they were good [laughing] they weren’t, they weren’t mean or anything…I had, I had an intern medicine doctor, Dr. [name] who was actually in emergency and he would check on me every day in the hospital. [P006] Another caregiver participant highlighted the benefit they saw in more of a teambased approach to care as well as the importance of caregiver supports in stroke care. They felt the inclusion of allied healthcare workers, such as social workers, helped caregivers process the experience of having their loved one suffer a stroke. Patient Participant 10’s daughter and second caregiver participant of the interviewed triad, said: The one part about ICU is that they had the social workers that cover each ward but they had, the social worker in ICU is actually a trauma counselor as well…So that was very beneficial for dad and I to go and talk to him and then he talked to mum once she was able to communicate a bit better but I think that was a very important part because it was very scary and traumatic especially for dad having found her and having to physically pull her into the hospital and then pulled his shoulder, it separated and stuff and just the whole thing was very traumatic and he’s not a big emotion sharer and the counselor was able to help him work through some of that beginning piece which was very, very valuable. [P010C2] Other challenges related to in-hospital stroke care were also discussed during the interviews. For example, the caregiver participant of Patient Participant 17 reflected upon the challenges of the care experienced by their loved one. They particularly reflected on EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 211 difficulties encountered when seeking assistance with personal care following a stroke. The caregiver of Patient Participant 17 commented as follows: Because he was because he was mixed up in the beginning, sometimes the nurses didn’t, they didn’t have patience with him but like he couldn’t, he couldn’t because of his, because his right hand he couldn’t hold himself to go pee, you know, like... hold himself to go pee right? So he had a few accidents with peeing all over the floor and stuff like that…I know that was really hard on him. [P017C] As previously noted, some patient participants (n=3) were moved from their original site of presentation to a facility with a stroke unit to receive a higher level of care or more specialized stroke intervention (e.g., EVT, rehab). One caregiver participant recalled their challenges of being transferred for care from a smaller facility to a larger facility to receive more specialized stroke care. In this instance, the patient participant was transferred to a comprehensive stroke centre in hopes of receiving EVT. However, due to challenges related to inclement weather and the amount of that time elapsed waiting for air transport, the patient became ineligible for the procedure. The caregiver participant of Patient Participant 18 said: So, there was a long wait there because it was a snowstorm they couldn’t get us to a flight so we arrived in Terrace at two in the night...And we didn’t get to Vancouver until two-thirty the next, we were in VGH at two-thirty the next afternoon… But he wasn’t a candidate [FOR EVT] so, um, then the neurologist just looked at me and she said this is gonna be a debilitating stroke…Yes so then we went up to the ICU. [P018C] Another patient participant reflected on their experience of the hospital transfer process. This participant needed to be transferred from a regional hospital to a larger hospital in Vancouver. They commented specifically on the aspect of being prepared for a transfer and having to go to Vancouver alone. They said: I remember them making the decision at the very last minute just before I left like they had come back and they’re like, no, there’s no like the weight restrictions and all that stuff they said there’s no room, there’s no this, they [husband] can’t go with you. And so that was very, that was very scary right and then like I said in and out of consciousness and then I remember getting, once I was at Vancouver…the very first EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 212 thing in the morning it was terrifying because you kind of wake up and you, you kinder know like, okay, something, I’m in the hospital right, something has happened. But like okay, where’s my family? I’m, I’m upset and like, okay, where, where’s my husband, where’s my sister? And they’re [nurses] kind of like well what are you talking about [laughing] you came alone and I’m like well where’s my, where’s my belongings at least, where’s my phone I can call them right and see what their plan is and they’re like nothing came with you. So that was very not being able to communicate so I was very emotional right? And then they’re asking me like what, what are their phone numbers and in this day and age honestly, I could not tell you my husband’s phone number its all on speed dial right? [P004] Overall, participants reflected on their experiences of care both pre-hospital and inhospital, as well as their care across different healthcare facilities. While those working in health services research or the health system may see the pre-hospital phase as distinct from the care received within the hospital or other acute care facilities, for a patient, they begin their encounter with the health system the moment the call for emergency medical attention is placed. As such, this is reflected in the discussion that unfolded during the interviews. Both patients and caregivers reported a range of journeys with negative and positive aspects. Importantly, those with more negative or difficult experiences offered potential solutions to some of the challenges they faced. Theme Three: Perceived Gaps in Care and Areas in Need of Further Support At the end of the interview, all participants were asked an open-ended question providing them with an opportunity to discuss or add anything that may have not been covered in the interview. As part of the open-ended discussion, many patient and caregiver participants were keen to explore areas they felt needed greater attention based on their stroke journey. While much of this did not relate directly to EHS or emergency stroke care, it reflected their holistic conceptualization of stroke care and their need for more coordinated and time-sensitive care across the stroke journey. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 213 During the interviews, there was considerable discussion among patients and caregiver participants concerning perceived gaps in care, particularly as they related to postdischarge care. In particular, there was a sense of unclear discharge plans and lines of communication between patients and providers regarding ongoing and post-stroke care. Other gaps in care and areas of further support centered around the need for education and health system level supports, including mental health, rehabilitation, and stroke education. Each of these subthemes is explored below. Mental Health A stroke can be a life-altering event resulting in considerable psychological challenges. Not surprisingly, mental health was a topic many participants discussed and emphasized. Both participants (n=8) and some caregivers (n=3) mentioned that there was a need for greater mental health supports to support survivors through their stroke journey. One patient participant commented on how a discussion regarding her mental health needs with healthcare providers was seemingly brushed off and not taken seriously. When exploring their own mental health needs post-stroke, Patient Participant Four recalled feeling as if they were not taken seriously by healthcare providers and that their identified needs were not a central focus of their medical care. For example, they said: I think the mental health part of it is very, very needs to be touched on I think that’s just something that gets swept aside right...I would express myself to two doctors like saying like this is how I feel and I just felt like I was kinder like brushed off like, yeah, whatever. [P004] Similar perspectives were expressed by Patient Participant Eight who talked at length about their mental health needs after experiencing a stroke. This patient participant shared how they were proactive about seeking the mental health supports they needed. Despite it being difficult for them, they did express and advocate for their needs, but did not get the care they EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 214 asked for. When they probed further to better understand the reasoning for the denial of support, they were told that they did not fit the eligibility criteria for mental health services. Patient Eight described the experience as follows: And I asked to see the psychiatrist there because of the depression and the anxiety, Dr. [name] . . . And they just kept telling me how wonderful I was doing because I was so proactive, they didn’t realize how exhausting that was that I had to do all this work but they kept saying … And so, he and when I talked to this [name] at Northern Health she put in a prescription to Dr. [name] and Dr. [name] denied it saying I was, I wasn’t bad enough. [P008] During the interviews with Patient Participant 17, a caregiver-patient dyad interview, the topic of mental health supports also came forward as a notable area of unaddressed need. Patient Participant 17, who suffered an ischemic stroke, commented on the frightening nature of stroke and their need for mental health services. Patient Participant 17 acknowledged the helpful physical rehabilitation and medical supports provided to them. But they commented that the psychological aspect of post-stroke care went unaddressed. They said: For the concentration…I, I, this is what I told the physio I said, you know, you guys helped me learn to walk again and use my right hand or my left hand and my left leg as best you could…And nobody helped me with my brain. [P017] The caregiver participant agreed with the perspectives put forth by Patient Participant 17. They further elaborated on this conversation around mental health and shared their views. They acknowledged that there was an important need for mental health supports for both survivors and their caregivers which they didn’t feel had been met. As a previous stroke survivor themselves, this caregiver participant said: I wish I had more information on how to help him at home. I mean it was a lot tougher for him because mine was a little bit worse and I had a knee replacement at the same time, so I was in worse shape…But I know the mental part for both of us as a caregiver and as a person who had a stroke the mental part afterwards, after the stroke and coming home... It's not taken care of very well. [P017C] EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 215 Overall, stroke was perceived as a life-threatening and life-altering event giving rise to profound physical, emotional, psychological, and social impacts. The topic of mental health was the most commonly reported unaddressed need reported by patient and caregiver participants. Supports to address physical needs following stroke were seen as important and were valued when provided. However, participants recognized there was a vital psychological component that was overlooked. Survivors generally reported that the physical aspects of their recovery were made more challenging when supports to address their psychological recovery were not incorporated as part of the care plan. Rehabilitation Access to rehabilitation services was another aspect that participants spontaneously raised during the open-ended component of the interview. Discussions regarding the availability of ongoing rehabilitation support emerged commonly and some patient participants (n=4) were critical of their inability to access ongoing supports. For these participants, post-stroke rehabilitation needs were not met. For example, Patient Participant Six mentioned not being offered rehabilitation after stroke. When considering why this was, they felt that they were not offered follow-up care because they did not suffer paralysis. However, they reinforced that even though paralysis wasn’t a concern, their loss of functioning, including loss of hand movement, was a serious concern to them and gave rise to ongoing functional limitations. They asked their primary healthcare provider for a referral and described their experience as follows: I found that that because I didn’t have bad paralysis...That I didn’t, I didn’t, I wasn’t offered the physio, I was offered the physio by my doctor when I said, I walked in and I said I can’t move, you know, I’m losing the mobility in my hand. And then it took a long time to get into the hospital physio. [P006] EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 216 In sharing their story of stroke, Patient Participant 11 discussed their experiences with rehabilitation. While Patient Participant 11 did receive some rehabilitation, it was eventually discontinued when there were no substantial improvements seen. Both the patient participant and the caregiver participant felt this negatively impacted recovery. Patient Participant 11, who also nodded in agreement during the conversation said that the cutting back on rehabilitation services had left a real void and a sense of hopelessness. Throughout narrating their experience of care, it was apparent that it was difficult to do so for both patient and caregiver participants. While both felt the need to share their experiences, they showed emotion and became tearful during the interview. For the caregiver participant, this included expressions of frustration with the system for what they perceived as a system failure and frequent pauses to gather their thoughts while addressing their emotional response. For the patient who experienced the stroke, there was a sense of immense sadness. Suffering from post-stroke aphasia made it difficult for this participant to fully narrate their experience, as well as causing lasting impacts for them socially. However, they frequently emphasized and nodded in agreement throughout the interview. Moreover, non-verbal cues such as sadness in their eyes and tears streaming down their face at various points throughout the discussion, highlighted their sense of loss due to the stroke. The caregiver of Patient Participant 11 described the experience as follows: They coded him so he, um, was kind of discharged from rehab but they have no bed so he’s still in rehab only for that reason…So once they coded him for that they stopped doing physio, they cut back his speech, OT has stopped…So P is sitting in that room now looking out his window and losing everything, it’s breaking my heart. [P011C] Similarly, Patient Participant 13 also commented on the aspect of unmet rehabilitation needs. Like Patient Participant 11, they too received some rehabilitation. However, in their case, the EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 217 focus was on physical therapy whereas they felt more occupational therapy for improving their hand function would have been ideal. They said: I guess the one thing if I was going to say something is, uh, like in terms of because it, when I was there in rehab right?... I had daily, I participated in daily, um, occupational rehab right which focused more on the hand stuff right because the physio was more about the legs and walking, some arm stuff right?... Yeah and again there hasn’t been much with the hand but again I don’t know how much they could, they could do. [P013] While most of the discussion around rehabilitation emerged from a patient perspective, the caregiver of Patient Participant 18 also identified rehabilitation as a priority area. In particular, the caregiver of Patient Participant 18 expressed the need for rehabilitation with regards to driving post-stroke. They saw this as having had a noteworthy impact on Patient Participant 18 concerning a loss of independence and a contributing factor to social isolation. They said: “And then the one thing like I don’t know if this would be part of your study but one area that they could really improve on at rehab is education around driving for post-stroke people”. [P018C] Overall, rehabilitation needs were a key area that participants felt warranted greater attention and investment. Patient participants reported being left with a lasting disability and having access to limited supports and ongoing rehabilitation. For these participants, participation in rehabilitation programs was seen as central to achieving a sense of independence and normality for their lives post-stroke as well as improving their overall quality of life. Education Experiencing a stroke event can be an overwhelming experience associated with emotional, physical, and psychological changes. These changes are often accompanied by a sense of fear or uncertainty concerning what lies ahead. For patients, family members, and EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 218 caregivers, receiving information on what stroke is and what to expect during the treatment and recovery process, as well as resources for accessing post-stroke psychosocial supports is an important component of their care experience. Having access to this information can provide some support in navigating an otherwise new, challenging, and evolving medical situation. In the interviews, most of the discussion surrounding educational needs focused on participants' needs for better understanding the care involved for stroke and the post-stroke recovery process. However, the caregiver of Patient Participant 20 brought forth their specific concerns around stroke symptom knowledge and awareness. In particular, they felt that based on their personal experience, the messaging around stroke warning signs needed to be expanded to include issues around balance and instability as a potential stroke symptom. They reported feeling so strongly about this that they took some actions in an effort to help change messaging around stroke symptom awareness. Most notably this included writing to the Heart and Stroke Foundation of Canada to share their personal experience and rationale for requesting this change as well as physically marking posted F.A.S.T. advertisements in the community with a pen to include other less common symptoms, such as balance challenges. They explained: So, so but back to the stroke, my takeaway would be education and the Heart and Stroke Foundation needs to get onto better education, they need the BFAST acronym. And after this happened with P I called and wrote an email, the Canadian Heart and Stroke Society...I have never had a return phone call. I have taken to, um, in hospitals when they have posters up for F.A.S.T., I have taken my little pen out of my purse and I add on balance issues, nausea, eyes, those are also symptoms of stroke. I realize it's kind of defacing public property [laughing] but if it saves one person or twigs one person or one nurse walks by and knows it. [P020C] During the interviews, participants also discussed the need for greater education and awareness surrounding stroke. Discussions centered on tailoring and orienting education EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 219 towards different stakeholders, including the health system, healthcare providers, patients, caregivers, and community. Both patient and caregiver participants felt that more education around stroke for these various groups would be beneficial as they progressed through their stroke journey and recovery process. At the health system level, there was a perception among some participants (n=2) of not having a similar level of supports that a more wellresourced facility would have. For example, the caregiver of Patient Participant One shared how they were unclear about processes and procedures concerning what was happening and what to expect and felt that a larger urban hospital would not have these challenges in relaying this information to families. They said: We were in the dark quite a bit. I only ask questions when I can get the attention of the doctor because they’re so busy, you know, with short staffing and all the rest of it…I realize that we could have been educated a bit more on the processes and the next thing to expect in health and recovery. And if I had been at like the hospitals in bigger cities have phones, step down units so that kind of a system would be between staff they would have the time to tell you and the patient what to expect and where to go for, you know, what your next steps are that’s definitely missing in a smaller community. [P001C] Patient participants also commented on a need for stroke education for their caregivers. For example, Patient Participant Five mentioned the need for stroke education specifically for caregivers and family members. They explained that having resources for stroke-specific to family and caregivers would help educate these individuals on developing a greater understanding of what their loved one was experiencing. They reflected on their own experience and frustration in not being fully understood. They said: “…my husband was never, he still doesn’t understand what a stroke does...He thinks I’m brain damaged its an, I have a brain injury but I’m still quite capable”. [P005] Similar to their caregiver, Patient Participant One further elaborated on education. In particular, they reflected on their own needs and expectations concerning patient-specific EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 220 education. They discussed the process of how their diagnosis was communicated to them. They specifically commented on how there was a lack of information provided by their physician on what the diagnosis meant in terms of illness trajectory or recovery process. They said: All that I remember is that the doctors told me that I’d had a stroke and not what to expect in terms of recovery or non-recovery or how sick you’re going to be or whatever. None of that I remember getting and I was concerned about that because I mean I’m a first aider and I’ve counseled patients in terms of what to expect when something happens on the ski hill or whatever it was for them and I didn’t get any of that, not a piece of it and that would have been a good position to understand that. [P001] Patient Participant Six commented on how they felt the need to actively go out and seek information after their stroke. They mentioned how it would have been helpful to receive this information before their discharge from the hospital. In particular, they felt that receiving information related to knowing what to expect in terms of their post-stroke recovery and adjusting to a new life would have been important. They explained: The booklet that I got, I don’t know whether it is, is it maybe here? It’s from the Stroke, Heart and Stroke Foundation. I think if they had that and especially for stroke people and to give that to them before they get discharged I think that would be very helpful to them even though I couldn’t read it but my husband could read it right? You know because they, because it is, it is a good book but it just wasn’t, it just wasn’t given out, you know, when you were discharged. I think that would have probably made me, a, feel a little more at ease if there’s something there it's just like, yeah. [P006] In addition to discussing the usefulness of pre-existing stroke education resources, Patient Participant Six also elaborated on what specifically they felt could be helpful for patients to receive upon discharge from the hospital. In particular, they felt that simple reinforcement and validation of their experience would be particularly useful for reassurance and in addressing their new reality. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 221 Yeah and that, so that pamphlet really should go home along with the stroke, the stroke book and that pamphlet for the brain injury and the one little pager to say, hey, you’re not, it's okay you’re not lost, you know. [P006] Some caregiver participants (n=3) also mentioned their need for supports. They reflected on their own needs for education on stroke as well as emotional support. Many discussed the toll that caregiving took on their lives and daily routines, including the physical, emotional, and financial implications of the experience. The caregiver of Patient Participant 18 communicated about a sense of helplessness and loneliness they experienced as they sat with their loved one in the hospital. They said: For me like when we got to Terrace I was just sitting at his bedside for like there was no real support for me there I just sat there and watched him have a stroke…So I mean if there could have been something more supportive for, for the, for the family member. [P018C] Life Following Stroke Reflections on what life was like following the acute phase of stroke and the recovery process were another important area of discussion. Most patient participants (n=9) took this as an opportunity to reflect on their lives before their stroke and the impact the stroke had on them. Overall, there was a sense of things being uniquely different after a stroke event, particularly concerning one’s day-to-day activities and hobbies. These reflections often centered around the aspects of physical, emotional, financial, and social losses stemming from a stroke. For many survivors, the experience of having a stroke was associated with a strong sense of loss. For example, Patient Participant Eight expressed at length the invisibility of stroke-related disability and the personality changes they experienced after stroke. In particular, they reflected on how they felt others' perception of them had shifted and the impact this had on their social life. They said: EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 222 I call it an invisible disability… the expectation it's not just the church it's everywhere… And I just, I felt judged, I was judged because I’m flak sometimes when I’m overwhelmed or tired I get flak . . . I’ve been termed harsh and judged harsh so its, you know . . . So I’ve become reckless, I was an in, extrovert before I fed on people, I’m not, you know, that, that’s what filled me up now, um, I don’t, the only people I trust are the people that I’ve been involved with stroke and at [community peer support group]…I don’t even trust my family because they don’t get it… And so I stay home a lot. [P008] Patient Participant Three was an avid hockey player and sports fan. However, having a stroke dramatically changed that for them. They reflected on how the changes to their involvement in sports after the stroke were challenging for them. They stated: “I can return to normal activity, never playing hockey again or any head contact is kind of always a risk.” [P003] Similarly, Patient Participant Six reflected on their life before and after stroke. They referred to their lifestyle before the stroke which included being a non-smoker and regular physical activity. They said: I was fifty-four years old when I had the stroke. I was very active, I didn’t smoke, I worked out, you know, four to five times a week, I played golf, hiked, you know, I was a very active person, yes, and then it all changed. [P006] Social impacts were another area that stoke survivor participants often reminisced on. Patient Participant One reflected on their community involvement before the stroke and how that had changed since. They said: Take the stroke away and make me go back to what I used to be…I say that with a smile on my face. I was doing a whole bunch of community things and a lot of those had to go by the wayside and, yeah, I kind of miss that. [P001] In addition to social impacts, financial impacts were also commonly described. The caregiver of Patient Participant 20 mentioned the profound impact of stroke and how their lives had changed. They specifically highlight the financial aspects of lost income that came after stroke. Both partners had to close their small business of over 40 years after Patient EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 223 Participant 20 experienced stroke to focus on recovery. This left extensive gaps and led to a greater struggle. They talked about the lack of post-stroke care and supports as well as a struggle for basic survival and return to normalcy. They described the situation as follows: And then aftercare has been nonexistent, it’s been literally, you know, both of us have lost our income, um, and then having to use your time to, P has actively been working on balance that sort of thing basically as your rehabilitation just trying to get back to you what you were. [P020C] On top of direct financial impacts for patient and caregiver participants, the added pressures of access to continued medical care were also mentioned. Participants interviewed for this study were from across communities in northern BC. This meant that while some had to travel from smaller communities to Prince George, others had to travel for higher-level specialist services to Vancouver. As such, participants were faced with ongoing decisions about how to best access care following a stroke. Some patient participants (n=3) discussed the challenges of having to travel for care. Patient Participant Five, a small business owner from northeastern BC, explained how traveling to receive care took a toll emotionally and financially on not just themselves but their employees and their families. They said: …this is the longest time, a lot of times when you go to appointments in Vancouver, they’ll say please come back next week. And, you know, it’s really like for me to come down here for two or three days it costs me thousands of dollars…You know just expenses, you know, heart expenses plus lost time at work because I don’t have that benefit plan or anything like that and I’ve got staff that are in here…You know they get the unpaid day off or paying while they’re on so…This is a social impact, an economic impact, you know, there’s that mindfulness of time-lapse. I just, I just got to the point I don’t, I just dread getting more tests and blood work and follow-up care I’m exhausted with it. [P005] Overall, participants reflected on what they perceived as gaps in their care and where further support could be provided to help address these shortcomings. As previously stated from a patient perspective, the encounter with the health system begins from the moment a call for emergency medical attention is placed. This was reflected in interviews as EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 224 participants reflected on their entire experience of care, instead of just the more acute phase (i.e., pre-hospital and ED phase) of their experiences. Overall, both patient and caregiver participants reported a range of journeys with negative and positive aspects. Importantly, those with more negative or difficult experiences offered potential solutions to some of the challenges they faced. Summary In conclusion, there was a multitude of factors that influenced the decision-making process that occurs when experiencing symptoms of acute stroke. Each of the 19 participants interviewed for this work, including the 12 patient participants and seven caregivers, provided unique and critical insights related to the process of deciding whether or not to seek emergency medical attention. In addition to this, they each shared their overall experiences of stroke and their respective journeys through the healthcare system, which were viewed as being a continuation from their first point of contact with emergency health services. First, the decision-making process of seeking emergency care for stroke highlighted many important barriers and facilitators involved in deciding on the mode of transport to the hospital and when to seek care. Second, participants provided context to their medical journeys as patients from their pre-hospital experiences through to those of being admitted to an acute inpatient ward. Finally, challenges experienced during life post-stroke and the perceived gaps in care provided a much-needed perspective on the lived experience of patients and highlighted key areas for increased investment in stroke services and supports. The experiential insights gathered provide invaluable context and perspective to the personal journey of experiencing, caring for, and living with stroke in northern BC. The next chapter, Chapter Six, continues with a discussion of the study findings, along with recommendations for research, practice, and policy. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 225 Chapter Six: Discussion This chapter presents a discussion of the findings for this multi-method exploratory study examining the use of EHS for stroke in BC and stroke care in northern BC. The discussion is presented by study phase. First is a discussion on Phase A exploring EHS use for stroke across BC, including findings by the regional health authority and by HSDAs. The key finding in this phase is the variability in EHS use for stroke across the province, and more specifically, the finding that low EHS use is not only limited to small urban, rural, and remote regions. This is followed by a more detailed discussion on Phase B examining strokerelated EHS use in northern BC, including sex-based differences in the receipt of emergency stroke care and predictors of EHS use in this region. The key findings in this phase are the variability in the use of EHS use and stroke care across the region. Following this, the qualitative findings focused on EHS use and stroke care in northern BC are discussed. These qualitative findings provide critical contextual understanding to the use of EHS for stroke in northern BC including a more in-depth understanding of factors impacting the decision to seek emergency care. Together these separate yet complementary study phases in this research respond to important provincial health system priorities and contribute to addressing a critical gap in the knowledge base with respect to the understanding of transport practices of those with stroke in northern BC. Finally, study limitations and recommendations are presented and the knowledge translation strategy for this research is outlined. Phase A: The Use of EHS for Stroke Across British Columbia Phase A of this research explored similarities and differences in EHS use for stroke across the five regional health authorities in BC. While BC’s average for stroke-related EHS use was 67.9% and comparable with the national average of 67.0% (Canadian Stroke Best Practices, 2018), variations across the province were noted. The averages for stroke-related EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 226 EHS in Fraser Health, Interior Health, and Vancouver Island Health were all above the provincial average of 67.9%, in contrast to Vancouver Coastal Health and Northern Health which were both below average. The use of EHS for stroke ranged from 58.8% in the Northern Health region to 70.2% in the Fraser Health region. Across HSDAs, EHS use ranged from 50.0% in Kootenay Boundary (12) HSDA to 73.1% in Central Vancouver Island (42) HSDA. Interestingly, health authorities with EHS use higher than the provincial average also had marked regional differences with low EHS use identified in some of their HSDAs. For example, while Interior Health had overall EHS use of 68.2%, higher than the provincial average, the Kootenay Boundary (12) HSDA within this health authority had the lowest EHS use among all HSDAs in BC at 50.0%. A key finding in this phase was that regions with lower EHS use identified in this study were primarily rural, remote, or urban/rural as defined by the BC Ministry of Health characterization of BC’s 61 geographic service areas based on population size and geographical considerations (i.e., urban/rural as 40,001 to 190,000 people, rural as 10,001 to 40,000 people, and remote as up to 10,000 people) (BC Ministry of Health, 2016). However, the population size of the region did not necessarily equate with the level of EHS use for many HSDAs. For example, the Fraser South (23) HSDA with a population of 784,977 had 68.5% EHS use among stroke patients, whereas the Fraser East (21) HSDA with a population the third of that size at 295,763 had higher EHS use at 71.8%. Similar findings were noted across all health authorities, including Interior Health, Vancouver Coastal Health, Vancouver Island Health, and Northern Health. Surprisingly, low stroke-related EHS use was also identified in one larger metropolitan area (i.e., metropolitan over 190,000 people) (BC Ministry of Health, 2016). EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 227 For example, in the Richmond (31) HSDA EHS use for stroke was 53.6%, 14.3% below the provincial average. Overall, areas of lower than provincial average stroke-related EHS use were identified in three of BC’s five regional health authorities. These included Interior Health, Vancouver Coastal Health, and Northern Health. Notably, Vancouver Coastal Health and Northern Health region were the only regional health authorities where each of the HSDAs was below provincial averages for stroke-related EHS use. For example, in Vancouver Coastal Health the Richmond (31) HSDA was 14.3% below average, the North Shore/Coast Garibaldi (33) HSDA 2.5% below, and the Vancouver (32) HSDA at 1.6% below. In Northern Health, the Northwest (51) HSDA was 11.7% below average, the Northern Interior (52) HSDA 8.7% below, and the Northeast (53) HSDA at 6.6% below. Overall, these variations of EHS use within health authorities seem to suggest that these regions are diverse in nature and that factors impacting EHS use are likely complex and multifaceted. As such, any potential initiatives to address EHS use, including for stroke, would benefit from greater consideration of these inter-regional differences and should employ a more context-specific approach to account for population needs and population health. Finally, while the focus of this research was on ground EHS and not air EHS, air EHS use was documented in the data and was included in the reporting for context. Of all the included health authorities, the Northern Health region was the only health authority where there was no documented air EHS use for stroke. This is a finding worth noting, especially in the context of accessing time-sensitive stroke interventions such as EVT. For example, EVT is available in all health regions, except for Northern Health. While eligible patients from Northern Health can receive EVT in centres such as Vancouver, BC (Vancouver Coastal EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 228 Health), New Westminster, BC (Fraser Health), Kelowna, BC (Interior Health), and Victoria, BC (Vancouver Island Health), many logistical factors must be accounted for, such as the considerable distance that patients must travel to access this treatment and the associated health system resources and out-of-pocket costs to patients for travel and repatriation home. Moreover, while a selection of patients can be treated within 24 hours of symptom onset, the majority of patients must be treated with EVT within six hours of their first symptoms (Canadian Stroke Best Practices, 2018). Therefore, having ready access to air transport assets in the region could help provide more equitable access to this procedure for those who experience an ischemic stroke within northern BC. It is to be noted that since the inception of this study, some encouraging EHS developments have taken place in northern BC. For example, as of December 2020, Prince George, BC, home of BCEHS Station 580, has a new Bell 412 helicopter to service the region. While the impacts of this service on stroke care remain unknown at this time, a dedicated air asset in this area is seen as a promising development. In addition to the change in the air ambulance fleet, some smaller communities, such as Fort St. James BC, have had their EHS arsenal enhanced due to the demands of the COVID-19 pandemic. For example, in December of 2020, BCEHS deployed its Major Incident Response Team paramedics to support the high volume of patient transfers in the community (Canadian Broadcasting Corporation, 2020). This was following a time when the area saw its monthly average of 911 calls surpassed in a single six-day period (Canadian Broadcasting Corporation, 2020; Global BC, 2020). While these deployments of additional paramedics were on a temporary basis, they were accompanied by national and provincial media attention which highlighted the vulnerabilities and disparities that exist concerning prehospital and emergency care in EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 229 smaller urban, rural, and remote settings. Since this development, there have been further changes in EHS services in BC and it is expected that these changes to service levels and policy will continue to evolve. As previously stated, areas with low stroke-related EHS use in this study were primarily rural, remote, or small urban. From a health services perspective, it is well-known that such regions are typically underserviced, including in the areas of pre-hospital and emergency services (Fleet et al., 2013; Fleet et al., 2018). The importance and urgency of achieving more equitable health service distribution in rural areas are reflected in government and health policy initiatives (BC Ministry of Health, 2015). This has led to a focus on bolstering health human resources in these regions, including the introduction of distributed medical education sites in BC (Snadden & Bates, 2005; Rourke, 2005), incentive programs including the BC Loan Forgiveness Program and Return of Service Agreements (BC Care Providers Association, 2018), and the introduction of community-based paramedic roles. From an EHS perspective, the community paramedicine program is an important initiative that directly seeks to help address ongoing resource issues, such as the lack of access to primary care, the shortage of healthcare providers, and the recruitment and retention of EHS providers, and access to prehospital care in BC’s smaller communities (BCEHS, 2019). While health human resource challenges in rural settings are well documented (Bellringer, 2019; Harris, 2017; Kornelsen et al., 2015; Snadden & Bates, 2005; Rourke, 2005; Ryynanen et al., 2010), there is a lack of existing data that focuses on EHS and prehospital care specific to stroke. This research has begun to examine stroke-related EHS use across BC, demonstrating variations including lower use of EHS in rural, remote, or urban/rural areas. Previous reports of EHS use are more limited and while not stroke- EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 230 specific, reflect similar patterns in access among rural, remote, and urban/rural areas. For example, a 2019 report by the Auditor General of BC evaluated performance-based access to EHS in BC (Bellringer, 2019). It was noted that patients living outside of large urban centres experienced a lower level of service due to longer response times from EHS, longer distances to be transported to receive hospital care, and the lack of ALS-trained paramedics in these communities. Similarly, 2012/2013 report by the BC Auditor-General entitled “Striving for Quality, Timely, and Safe Patient Care: An Audit of Air EHS Services” concluded that “the BCEHS Service was unable to demonstrate the quality, timeliness, and safety of its patient care” (p.4). While in 2017 BC Ombudsman report entitled “Will it be there? A Report on Helicopter Emergency Medical Services in British Columbia” identified continued gaps in the provision of emergency medical transportation services for those living and working in the more rural areas of BC. While this 2017 report was developed with a focus on the industry sector, specifically forestry, the author acknowledged that rural areas are unable to sustain the same level of medical services as those available in urban regions. However, it was also stressed that as the distance to the nearest medical facilities increases, the access to timely medical transportation should be enhanced, not reduced. Overall, these reports signify enduring disparities in EHS access. Although it was not possible to examine distance as it relates to EHS use in the present study, the challenges of vast geographies and dispersed healthcare service, as noted in these government reports, cannot be understated and may have contributed to the lower rates of stroke-related EHS use observed in some regions, especially those in rural and remote areas of BC. For example, a study by Reed and Bendall (2015), examined EHS use in rural and remote areas of Australia. They found disparities in rates of EHS use between urban EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 231 and non-urban areas for residents experiencing serious health emergencies, as defined by Australasian Triage Score of either one or two for conditions such as cardiac or respiratory arrest, airway risk, cardiac chest pain, and major trauma. In this study, people in the outer rural areas were 55.1% less likely to use EHS overall and 27.9% less likely in the event of a serious health emergency as compared to their urban counterparts. Based on these findings, Reed and Bendall (2015) recommended that unmet need should be considered more than just an issue of underutilization and supported the need to further explore factors impacting the association of rurality with low EHS use for medical emergencies. It is also important to note that these geographical challenges complicating health service delivery are not unique to BC. As highlighted by Harris (2017), the US states of Washington and Alaska both have similar geographical barriers for health service provision to BC. However, both these states, unlike BC, have enacted state-level legislation and policies to ensure that all residents have access to level three trauma centres within 60 minutes. This in turn reduces the geographical barrier of service access to time-sensitive emergency medical care that is faced by patients in BC. A similar approach of enacting provincial legislation to mandate improved access to emergency transportation in BC could help address some of the geography-based challenges patients outside the larger urban centres of the province currently face when needing to access emergency medical care. The Canadian province of Alberta is another example of the difference in EHS response. British Columbia, in comparison to Alberta, is home to a larger population and has a larger landmass at 944,735 sq. km compared to 661,848 sq. km of Alberta. British Columbia EHS operates 188 EHS stations and 540 ambulances across the province, whereas Alberta Health Services (AHS) has 204 EHS stations and 390 ambulances. This equates to EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 232 one station per 5,025 sq. km in BC and one per 3,244 sq. km in Alberta; or one ambulance per 1,750sq. km in BC and one per 1,679 sq. km in Alberta. A greater density of stations ensures greater access to EHS for the population which in turn could lead to greater use of EHS services and better patient outcomes. For example, Chocron et al. (2019) examined the relationship between ambulance density and outcomes following out-of-hospital cardiac arrest. They found that a greater allocation of EHS resources was associated with improved patient outcomes. More specifically, after adjustment for patient and sociodemographic characteristics, a higher density of both advanced life support (ALS) (aOR=1.31; 95% CI 1.14-1.51, p<0.001) and basic life support (BLS) (aOR=1.21; 95% CI 1.04-1.41, p=0.01) ambulances was associated with the successful return of spontaneous circulation during myocardial infarction. Whereas only the number of ALS ambulances was significant for survival at discharge (aOR=1.30; 95% CI 1.06-1.59, p=0.01). As previously stated, the 2019 report by the Auditor General of BC noted a lack of ALS-trained paramedics in rural communities. As a consequence, patients in communities where there were no ALS-trained providers have fewer medical interventions available to them outside of a hospital setting. Currently, it is estimated that only 28, or 5.2% of BC’s EHS providers are ALS-trained, with the majority of these highly trained EHS personnel being primarily located in larger urban communities (Kornelsen et al., 2015). In the Northern Health region, the city of Prince George, BC is the only community that has ALS-trained EHS providers (F Besserer, personal communication, April 25, 2019). By comparison, 2/3 of Alberta’s EHS providers are ALS equipped. This variation is important since it translates into a higher level of care both at the pre-hospital and hospital levels. For example, ALS-trained EHS providers can administer more medications, perform intubations, and offer advanced EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 233 cardiac resuscitation. While the existing evidence regarding the differences in care and patient outcomes for the level of care based on EHS provider training remains scarce and mixed (Kornelsen et al., 2015; Ryynanen et al., 2010), it has been determined that ALS trained EHS providers provide the best outcomes in cases of transport over large distances (Ryynanen et al., 2010). This is often the case in an area as vast as northern BC where patients must be transported long distances to receive the care they require. Other studies examining emergency response and patient transport have supported this notion of the importance of timely access to ALS care at the prehospital stage. For example, the findings of some older studies have demonstrated that timely access to EHS is an issue and that there are significantly longer response times in cases of major trauma for rural areas when compared to urban and smaller urban centres (Gonzales et al., 2009; Grossman et al., 1997; Rogers et al., 1997). Within the context of the current study, having a greater proportion of ALS-trained EHS providers could, in turn, have important impacts for the safe transport of patients across long distances. For example, at the onset of this study only six of the 18 acute care facilities in the Northern Health region, were equipped to provide basic stroke care, including neuroimaging and thrombolytic therapy. A seventh centre started offering neuroimaging and thrombolytic therapy in January of 2019. As such any patients with stroke presenting to a facility outside these seven centres in Northern Health region must be transported to their nearest regional centre for care. In addition to the issue of patient transport over large distances, having greater access to EHS, including ALStrained EHS providers and community paramedics, may offer a higher level of care and improve patient outcomes. This is especially relevant in the context of emerging pre-hospital treatments for stroke, including the administration of neuroprotectants, such as NA-1 (Buick EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 234 & Drennan, 2016). Exploring factors impacting stroke-related EHS use is a timely issue and this study provides examples of where such initiatives may be targeted for the greatest impact. Of note, this study has identified variations in EHS use and has highlighted areas of low stroke-related EHS use. In identifying variations in EHS use, the findings of this study also suggest that the issue of low stroke-related use EHS for stroke is not entirely limited to small urban, rural, and remote regions. While the majority of regions with low stroke-related EHS use were primarily rural, remote, or small urban, the identification of a metropolitan region, with ready access to EHS demonstrates the complexity of the issue of EHS use for stroke. The Richmond HSDA had only 53.6% of residents using EHS during a stroke event. While it was not possible in this study to determine the underlying reasons behind low use, this lower rate of use may in part, be attributed to the need to develop more targeted public awareness around stroke as a medical emergency. For example, the Richmond area is one of high diversity, where 76.3% of the population are of a visible minority and a further 7.8% identifying as new immigrants (Provincial Health Services Authority, 2019). While it was not specifically explored in this study, it is plausible that factors related to ethnicity and culture, such as potential language and messaging barriers may affect health service use patterns, especially in an area like Richmond that is home to a very diverse population. While there is little prior literature to provide a comprehensive understanding of ethnic differences in stroke-related EHS use, there have been some studies that have attempted to better understand this issue (Campos-Sousa et al., 2007; DuBard et al., 2006; Ekundayo et al., 2013; Howard et al., 2005; Hwang & Zerwick, 2006; Mochari-Greenberger et al., 2015; Pratt et al., 200; Siddiqui et al., 2008; Srivastava et al., 2001). For example, EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 235 ethnic differences were explored in work undertaken by Mochari-Greenberger et al. (2015). In this study, researchers found lower rates of stroke-related EHS use among Hispanic, Asian, and Black populations in comparison to Caucasians. Even after adjustments for stroke severity, age, and other confounding patient characteristics, Hispanic and Asian patients were 20 to 29% less likely to use EHS. Similar findings on lower EHS use in rural areas and minority communities were also reported by Ekundayo et al. (2013) from the United States. In this retrospective, epidemiological, population-based study, it was found that along with individuals of rural residence, those belonging to minority backgrounds were also less likely to use EHS. Building on this finding of low EHS use in the Richmond HSDA, future research in this area could include a more focused exploration of factors impacting provincial and regional variations, including how ethnicity and racial variation may impact stroke-related EHS use in BC. Overall, the findings from Phase A of this study address a knowledge gap related to the use of EHS for stroke in BC. As previously noted, existing initiatives that have examined emergency medical transportation in BC have not been specific to stroke. Findings in this phase of the study highlight geographic variability in EHS use for stroke, including the identification of regions with EHS use that is lower than the BC provincial average. This is important given that early and rapid access to EHS in a stroke event is essential for the timely receipt of evidence-based treatment, including thrombolytic therapy (Powers et al., 2018). As such, these findings could be used to identify areas in need of further exploration, as well as the need for more focused and contextualized approaches to optimize stroke care. More targeted policy and public health strategies at the prehospital level could help meaningfully alter the course of stroke outcomes for high-risk populations by promoting greater awareness EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 236 of stroke signs and symptoms, as well as encouraging faster access to emergency services in the event of acute stroke. Phase B: The Impact of Mode of Transport to Hospital on Patient Receipt of Emergency Stroke Care in Northern British Columbia The use of EHS for transport during a stroke has been identified as a leading factor in reducing pre-hospital delay and ultimately ensuring timely access to subsequent in-hospital care, including thrombolytic therapy (Canadian Stroke Best Practices, 2018). However, a national report entitled “The Quality of Stroke Care in Canada” (Network, 2011) found that two-thirds of people who have an ischemic stroke do not arrive in time at a hospital equipped to provide evidence-based stroke care. This is critical as early symptom recognition and activation of EHS are essential to meeting time targets and eligibility for treatment. While more up-to-date reporting for BC is needed, it is clear that gaps in stroke care exist and that the landscape of stroke care in northern BC remains relatively unexplored and largely unknown. The most recent provincial stroke report from the BC Stroke and Transient Ischemic Attack Collaborative, which did not include data from northern BC, found that only eight percent of patients received thrombolytic therapy and of these, two-thirds were beyond the recommended timeframe (Provincial Health Services Authority, 2011). Up until this point, stroke care in northern BC, including prehospital and emergency services, has remained largely unexplored. There is a need for greater attention to the delivery of stroke services in northern BC, a region that covers two-thirds of the province’s landmass. This is a part of the province where the mortality rate for stroke is 18.1%, or 5.1% higher than the provincial average of 13.0% (NH CHIP, 2016; Statistics Canada, 2013). While several possible factors could contribute to this disparity in stroke mortality, it is known that this region of the province EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 237 remains underserved with a high level of unmet health needs (BC Care Providers Association, 2018; Kornelsen et al., 2016). Thus, given how much remains unknown about stroke care in northern BC and what is known about the challenges that exist for providing timely and evidence-based stroke care in small urban, rural, and remote settings, Phase B of this study aimed to explore the use of EHS for transport to hospital among those suffering from a stroke in northern BC. More specifically, this work aimed to identify what the similarities and differences (in neuroimaging completion, thrombolysis administration, and prescription of antithrombotic therapy) were among individuals who arrived at the hospital via EHS as opposed to non-EHS means, including self-transport using a taxi and private car, in six northern BC cities (Prince George, Quesnel, Terrace, Prince Rupert, Dawson Creek, and Fort St. John. While CT imaging became available in January of 2019 in Smithers, BC there was no data available for the period of interest and therefore this site was not included in this analysis). The first aim of this phase was to examine the rate of EHS use for stroke, including identifying if there were any differences in the receipt of emergency stroke care, including neuroimaging, thrombolytic therapy, and the prescription of antithrombotics upon discharge from the ED based on the mode of arrival to the hospital. The second aim was to explore whether there were any sex-based differences in the receipt of emergency stroke care, including neuroimaging, thrombolytic therapy, and the prescription of antithrombotics upon discharge from the ED. The third and final aim was to explore potential predictors of EHS use for stroke in this population. In Phase A, data from the DAD database was used to assess the use of EHS for stroke across the entire Northern Health region, and this was found to be 58.8%. In Phase B, using data from the CIHI Stroke Special project 340, which was limited to the six facilities EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 238 providing stroke care, EHS arrival for stroke was 60.6%. While the percentage of strokerelated EHS use was higher when the analysis was limited to the six focal sites in northern BC, a key finding in this phase was that the averages for EHS use for stroke in both phases A and B remained lower than the provincial average of 67.9% and the national average of 67.0% (Canadian Stroke Best Practices, 2018). Furthermore, differences in stroke-related EHS use were found between HSDAs and individual facilities in this region. These ranged from 53.7% in the Northwest, 61.3% in the Northeast to 64.8% in the Northern Interior. At the facility level, EHS use varied from 51.4% for patients presenting to Prince Rupert Regional Hospital to 67.3% for patients presenting to the University Hospital of Northern BC in Prince George, BC. These variations highlight the regional diversity of these areas and support the notion of adopting a more targeted, responsive, and needs-based approach to health service delivery in the Northern Health region. Although a stroke can happen at any age, it is estimated that 80% of strokes occur in those over 60 (Heart & Stroke Foundation of Canada, 2017). In Northern Health, there were no significant differences between the average age of stroke patients across HSDAs or facilities in the region. The average age of stroke patients ranged from 68.7 (+13.0) years in the Northwest (51) HSDA to 70.3 (+ 14.3) in the Northern Interior (52), and 68.6 (+14.2) years at Mills Memorial Hospital in Terrace, BC to 73.6 (+12.7) years at G.R. Baker Memorial Hospital in Quesnel, BC. While this region has the youngest population in the province, it is also home to the fastest-growing proportion of seniors in BC (NH CHIP, 2016). This warrants consideration for the ongoing planning of stroke care delivery in Northern Health as balancing the realities of these evolving population dynamics with the EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 239 need to provide comprehensive and evidence-based stroke care closer to home for the residents of the region may become increasingly challenging. While the focus of this research was to explore user-initiated mobilization of EHS in this region which excluded those residing in long-term care facilities, it is possible that the exploration of these populations could yield additional insights and potentially expose further disparities related to stroke in this region. Previous studies have identified that stroke is the third most common diagnosis among residents of long-term care facilities (Shah et al., 2011; Tataris et al., 2014). Likewise, studies from the United States and the United Kingdom suggest that 15-18% of long-term care residents are stroke survivors (Caffrey & Sengupta, 2014; Shah et al., 2011). Since Northern Health serves a rapidly aging population (NH CHIP, 2016), a better understanding of stroke in long-term care populations in this region is warranted. In this study, differences across Northern Health HSDAs and facilities were examined and a key finding was the variability in stroke-care indicators. For example, there was variability in the completion of neuroimaging which ranged from 76.6% (n=49/64) at G.R. Baker Memorial Hospital in Quesnel, BC to 96.3 % (n=286/297) at the UHNBC in Prince George, BC. This variation is noteworthy as neuroimaging is essential for determining stroke etiology, allowing for a better distinction between cerebral ischemia and hemorrhage. Lower rates of imaging completion may have downstream implications for the stroke care pathway, including preventing timely access to evidence-based interventions, such as thrombolysis and EVT (Canadian Stroke Best Practices, 2018). In particular, door-to-imaging time is viewed as a relevant marker for establishing strong systems of stroke care. It is an early first step in the stroke care pathway and reducing time to imaging is associated with clinical EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 240 improvements (Canadian Stroke Best Practices, 2018; Caplan, 2016; Hsieh et al., 2016). In the dataset used, neuroimaging was documented as a simple confirmation of receipt within 24 hours of ED arrival. While this provides valuable data, it does not allow for a more nuanced examination of how EHS use may impact key stroke care interventions. As such, having more detailed data on specific time-to-imaging, as opposed to the simple confirmation of whether imaging was completed within 24 hours of ED arrival, could have provided greater insight into the coordination and flow of care and helped to identify potential targets for improvement. Moreover, there is also recognition that the design of the current study and data collection processes meant that the experiences of those presenting outside these main six sites in the Northern Health region were not captured. While the volume of stroke outside these main sites in the region is known to be small, patients from these smaller rural and remote areas are also more likely to have fewer interventions available to them in the event of stroke and may experience long delays in accessing time-sensitive care when faced with the reality of being transported long distances to the nearest hospital capable of providing the higher level of care required. The administration of thrombolysis for patients with stroke also varied. It ranged from 11.2% (n=27/241) in the NI HSDA to 32.6% (n=29/89) in the NE HSDA for those with confirmed ischemic stroke. Between facilities, thrombolysis for those with confirmed ischemic stroke ranged from 2.2% (n=1/45) at the G.R. Baker Memorial Hospital to 42.9% (n=12/28) at the Dawson Creek and District Hospital. It is worth noting the high proportion of strokes that were documented as unknown stroke type within these regions. The highest proportion of cases documented as such were in the NE (53) HSDA at 41.8% (n=81/194) and the facility level at the Dawson Creek and District Hospital at 48.7% (n=36/74). When EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 241 accounting for the inclusion of all stroke types, the administration of thrombolysis was different than calculating for ischemic stroke alone. For example, while thrombolysis among those with confirmed ischemic stroke in the NE HSDA was 32.6% (n=29/89), it was 24.2% (n=47/194) across all stroke types and 38.3% (n=18/47) of that 24.2% were documented as unknown stroke type. Similarly, while thrombolysis for those with confirmed ischemic stroke was 42.9% (n=12/28) at the Dawson Creek and District Hospital, it was 33.8% (n=25/74) across all stroke types and 52.0% (n=13/25) of that 33.8% were documented as unknown stroke type. Overall, the rates of thrombolysis administration vary greatly when considering the calculation of administration based on confirmed ischemic stroke, unknown stroke, or a combination of all stroke types. This issue of the denominator is not unique to this study (Paul et al., 2016). However, the high percentage of strokes documented as unknown, which may in part stem from the lack of consistent documentation and charting, make it challenging to fully examine the uptake of time-sensitive evidence-based interventions such as thrombolysis and the impact of EHS use on this stroke care indicator. Moreover, the limitation of not knowing more specifically when neuroimaging was received or read presented challenges to knowing with certainty whether thrombolysis should or should not have been administered to all those documented with unknown stroke type or whether or how access to imaging may have impacted the decision to provide thrombolysis. As such, this presents additional challenges for the evaluation of patient outcomes and systems of care for stroke in this region. This is problematic as thrombolysis is not only critical to reducing mortality and morbidity (Caplan, 2016; Hacke et al., 2008; Quain et al., 2008) but the underuse of EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 242 thrombolysis has also been linked to economic implications for the health system. For example, while a more up-to-date analysis is required, Yip and Demaerschalk (2007) estimate that even small increases in the proportion of Canadians with ischemic stroke, receiving tPA could result in considerable cost savings for the health system. More specifically, they suggest that for each two percentage points of increase in use, up to $757,204 on average could be saved per year in Canada, and up to $988,660 per year in BC. While beyond the scope of this study, undertaking an in-depth analysis of the contextual factors related to thrombolysis related to the administration of thrombolysis may yield important insights. It is plausible that documentation alone may not account for these variations and other factors may be at play. While it is not possible to determine the exact causes or reasons behind the variation of the documentation for the unknown stroke type, it is possible that factors related to health human resource shortages, such as clinician shortages, may potentially limit the administration of thrombolysis. For example, one may assume that if centres are faced with inconsistent access to radiology services, such as the lack of aroundthe-clock coverage for CT or MRI services, or challenges with access to specialist colleagues for further consultation, it is likely that rates of thrombolysis may be impacted. While beyond the scope of this study, exploring contextual factors related to neuroimaging completion may yield some important insights. In addition to variations in the administration of thrombolysis, the proportion of patients to receive thrombolytic therapy differed by mode of arrival, X2(1, N=121) = 0.90, p=0.04. Among patients with ischemic stroke, the administration of thrombolytic therapy was 20.8% (n=60/289) for those arriving by EHS compared to the 15.9% (n=31/195) who EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 243 did not arrive by EHS. Due to limitations in the data collection process of the administrative data used for this study, it was not possible to determine the relationship between EHS use and times of door-to-imaging as the exact time of imaging was not captured. Enhancing the reporting of the intervention timelines may allow for a more detailed examination of factors impacting stroke care and outcomes. However, similar differences in stroke care related to EHS transport have previously been documented in the literature, with EHS use being associated with more rapid assessment and treatment than non-EHS (Ekundayo et al., 2013; Kuster et al., 2013; Mochari-Greenberger et al., 2015; Saver et al., 2013; Tong et al., 2012). For example, research by Ekundayo et al. (2013) found that EHS transport was independently associated with earlier arrival (onset-to-door time, ≤3 hours; adjusted OR=2.00; 95% CI 1.93-2.08), more prompt evaluation (more patients with door-to-imaging time, ≤25 minutes; OR=1.89; 95% CI 1.78-2.00), more rapid treatment (more patients with door-to-needle time, ≤60 minutes; OR=1.44; 95% CI 1.28-1.63), and more eligible patients to be treated with tPA if onset is ≤2 hours (67.0% versus 44.0%; OR=1.47; 95% CI 1.331.64). Overall, akin to the findings in Phase A, these variations of stroke-related EHS use, at the HSDA and facility-level similarly suggest that these regions are diverse and nonhomogenous in their composition. As such, any potential initiatives to address EHS use, including for stroke, in these areas could benefit from the greater consideration of these interregional differences. Employing a more context-specific approach to account for population needs and population health could help improve patient care and outcomes in regions with documented low use. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 244 The similarities and differences examined at the regional, inter-regional, and interfacility levels provide a foundation with which to begin to understand health service use for stroke in northern BC. The data can be used to inform the planning, delivery, and improvement of stroke-related health services in this region, including assisting with targeted population-level efforts to increase the awareness of stroke as a medical emergency and the importance of seeking prompt medical attention. Furthermore, they highlight the importance of improving recognition, more rapid triage, and the application of uniform assessment protocols at hospitals throughout the region irrespective of whether a patient presents via EHS or non-EHS means. In addition to exploring variations in EHS use, the data were examined for similarities and differences related to sex. There is growing evidence to suggest that there are differences in health risks, use of health services, health outcomes, and health system interactions between men and women due to a combination of biological, economic, and social influences (Greaves, 2015; Johnson & Beaudet, 2013). Likewise, there has been increasing calls for researchers to attend to the issues of sex and gender in their research, as a means of contributing more relevant and responsive health research (CIHR 2017; Gahagan et al., 2015; Norris et al., 2019) and addressing enduring health outcomes and inequities (Johnson & Beaudet, 2013). In the context of stroke, we know that one-third more females die following stroke than males (Heart & Stroke Foundation of Canada, 2018). This statistic cannot alone be attributed to the older age of females at stroke onset, however, the exact factors that contribute to this difference in mortality are not fully known. There is a recognition that there are issues with health equity for females, as highlighted by a recent national call to action from the Heart and Stroke Foundation of Canada (2017) to address the under-prevention, EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 245 under-research, under-treatment, under-support, and under-awareness of female heart and brain health. As such, reporting on sex-based differences aims to shed light on the unique impacts that biological sex can have on disease onset, diagnosis, treatment, and recovery. Furthermore, while gender is important, it remains uncaptured in the administrative datasets used for this study and was therefore not explored. Beginning to capture this information where possible or using proxy measures may help identify and address factors specific to gender leading to more robust and responsive stroke research (Leung et al., 2014; Pelletier et al., 2014). More importantly, integrating the documentation of sex and gender more widely in health data will allow for more complex analyses of disease and illness. In this study, a sex-based analysis was undertaken to better understand emergency stroke care in Northern Health. Empirically, it is well known that females experience more stroke events than males due to age and sex-specific risk factors (Caplan, 2016; Goff et al., 2013; Reeves, 2008). For example, 59% of all strokes across Canada occur in females, (Heart & Stroke Foundation of Canada, 2018). Interestingly, in this study, only 42.7% of all strokes in Northern Health occurred in females. This was true across all HSDAs and all facilities, except for the Dawson Creek and District Hospital. Across the Northern Health region HSDAs, the proportion of females with stroke ranged from 41.3% in Northern Interior (52) HSDA to 45.0% in the Northwest (51), whereas the range was larger across facilities, from 36.7% (n=44/120) female at Fort. St. John Hospital to 52.7% (n=39/74) female at the Dawson Creek and District Hospital. While it was not possible to ascertain the exact factors that may have contributed to this finding, some inferences may be made based on what is already known about the health of the population in this region. First, it is known that Northern Health is the only region in EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 246 BC that has more males than females (NH CHIP, 2016). One explanation for this is related to the industrial and resource-based economies in this region, such as mining, oil and gas, and forestry, which are heavily male-dominated (Badenhorst et al., 2014; Hanlon & Halseth, 2005). Not only do these economies of 'boom and bust' cycles of natural resource extraction and development present challenges with health service delivery, due to the transient nature of working populations in these areas (Badenhorst et al., 2014; Parkes, 2016), they can also play a significant role in exacerbating health inequities (Ostry, 2009). For example, the Northern Health region has the highest rates of smoking, obesity, and physical inactivity in the province (Kruger et al., 2016), Some research has found that there are higher rates of these risk factors in those working in industrial economies compared to the general population (Badenhorst et al., 2014; Ostry, 2009). Furthermore, the poorer health status of men in this region is reflected in the fact that men in northern BC die earlier than men in other regions of the province and that men die earlier than women of all causes in northern BC (Bowering, 2011). These factors may, in part, explain the overrepresentation of the proportion of males experiencing a stroke in this region. Additionally, one may also infer that excluding those residing in long-term care facilities could be a potential explanatory factor. For example, more females tend to experience stroke later in life than males (Caplan, 2016). In BC, it is estimated that 65% of residents in long-term care are female (BC Office of the Seniors Advocate, 2019). Therefore, it is possible that accounting for populations in longterm care may have shown a greater overall incidence of stroke in females, consistent with the existing epidemiological evidence (Caplan, 2016; Heart and Stroke Foundation, 2018). In this study, a sex-based analysis on key stroke indicators including neuroimaging, the administration of thrombolytic therapy, and the prescription of antithrombotic therapy, EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 247 was undertaken. The proportion of those with completion rate of neuroimaging within 24 hours of ED presentation differed by sex, X 2(1, N=784) = 2.70, p=0.001. The analysis of the study data revealed that the proportion of those with neuroimaging within 24 hours of ED presentation differed by sex, X2(1, N=784) = 2.70, p=0.001. Among males who received neuroimaging within 24 hours of hospital arrival (95.3%, n=428/449), there was no significant difference for the completion of neuroimaging for the 58.6% arriving by EHS (n=251/428) versus the 41.4% (n=177/428) arriving by non-EHS (X2(1, N=449) = 0.53, p=0.46. However, among females who received neuroimaging within 24 hours of hospital arrival (92.5%, n=310/335), neuroimaging receipt was significantly higher among the 64.2% of females arriving by EHS (n=199/310) versus the 35.8% (n=111/310) arriving by nonEHS, X2(1, N=335) = 4.03, p=0.045. . While no other statistically significant differences were found based on either sex and/or mode of arrival to the hospital, this finding is of note, as neuroimaging is an important first step in establishing a diagnosis and for determining whether the patient is eligible for further treatments, including thrombolytic therapy. Existing findings related to the impact of sex on stroke care and outcomes have been inconsistent, with some studies revealing no differences for in-hospital stroke care (Kapral et al., 2005; Eriksson et al., 2008), while others have demonstrated differences in the use of diagnostics and treatment between males and females (DiCarlo et al., 2003; Gargano et al., 2008; Holroyd-Leduc et al., 2000; Rudd et al., 2007; Sheikh et al., 2003). This is important as delays in accessing time-sensitive stroke treatments can have important implications for patient outcomes. Therefore, given the lack of consensus in the literature, continued investigation of the impacts of sex is warranted. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 248 While this current study provided some initial findings regarding sex differences in acute stroke treatment in a rural northern region, there is still much that remains to be learned about stroke differences among females and males. Stroke research, particularly when it comes to sex differences, is a relatively new area of investigation, but there is growing attention being paid to sex differences in stroke treatment and outcomes (Heart & Stroke Foundation of Canada, 2017). Our understanding of the differences between male and female brains, responses to different therapies and treatments, as well as the impact on outcomes is just beginning to emerge (Bushnell et al., 2018; Heart & Stroke Foundation of Canada, 2017). There is very little robust evidence examining the influence of gender (true gender as opposed to sex) and stroke. Sustained and continued investment into inclusive sex and gender-based research is critical to better understanding these differences and subsequently help improve stroke prevention, treatment, and outcomes for women, men, and genderdiverse individuals. Finally, this Phase B of this study also examined possible predictors of stroke-related EHS use in this region. A total of five models were tested to explore potential predictors of EHS use. The chosen model was a poor fit and explained only 5.9% of the variance in EHS use. Analysis of the study findings indicated that the odds of using EHS were greater for those 65 years of age or older (OR=1.92; 95% CI 1.41-2.62, p<0.001) than those under 65 and that the odds of using EHS were lower for those in the NW HSDA (OR=0.50; 95% CI 0.30-0.86, p<0.011) compared to those in the NI HSDA. While there is a lack of widespread research on EHS use based on geography, the findings from this study are consistent with some previous research that has found that older age is associated with greater use of EHS (Adeoye et al., 2009; Ekundayo et al., 2013, Govindarajan et al. 2013; Tataris et al., 2014; EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 249 Yin et al., 2016). For example, Tataris et al. (2014) found that older age was independently associated with EHS use for stroke (OR=1.21; 95% CI 1.12-1.31). In general, the limited findings that exist on predictors of stroke-related EHS use have been inconclusive. For example, Govindarajan and colleagues (2013) found regional variations in stroke-related EHS use in the US but did not find an urban or rural association. In contrast, Ekundayo et al. (2013), who also examined stroke-related use in the US, found that living in a rural area was associated with less use of EHS. This finding was consistent with the work of Yin et al. (2016) also examined stroke-related EHS use in China and reported that those who lived in urban communities were more likely to use EHS than those in non-urban areas (OR=2.5; 95% CI 1.8-3.5). Given the differences between the geography and health systems of Canada, the US, and China, having a Canadian comparison would be beneficial to compare the findings of the current work. Therefore, the current data points alone cannot explain factors predicting EHS use for stroke in this population. Furthermore, a model with poor fit does indicate that the issue of EHS use for stroke is complex and that other factors, the full scope of which is unknown at this time, could explain variations in use. Phase C: Exploring Barriers and Facilitators to Initiating the Use of EHS for Transport to the Hospital Among Stroke Survivors and their Caregivers in Northern British Columbia Despite advances in the prevention and treatment of stroke, there remains much room for improvement in patient outcomes. Presentation delay for stroke patients has been identified as one of the most critical areas for intervention to reduce time to presentation and increase the likelihood of delivering time-sensitive interventions for stroke (Dombrowski et al., 2015; Zerwic et al., 2007). While timely stroke care can depend on some factors, the importance of contextual and patient-related factors contributing to this delay cannot be EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 250 underestimated. Moreover, while much of the efforts directed at improving in-hospital delays have been successful, they are diminished when taken into consideration with the lack of improvement in time from symptom onset to patient presentation (Pulvers & Watson, 2017; Zerwic et al., 2007). In fact, there has been little improvement over the last two decades when it comes to improving patient presentation time for stroke (Chow et al., 2004; Pulvers & Watson, 2017). The primary objective of Phase C for this study was to better understand the decisionmaking process around seeking emergency medical attention, including using EHS for transport to the hospital among stroke survivors and their caregivers. A core focus of this work was to explore contextual factors surrounding the decision-making processes for seeking emergency medical attention and EHS use for stroke in northern BC. The complexity surrounding the use of EHS for stroke can in part be demonstrated by the lack of consensus on a set of core determinants impacting EHS use for stroke in the literature. Similarly, this was reflected in the findings from Phase B through a model that was of poor fit and unable to account for factors predicting EHS use for stroke in this population. As such, this highlighted that factors other than those accounted for in the quantitative data, including age, sex, geography, and type of stroke, impacted the use of EHS in this region. It is hoped that these key findings from the qualitative phase of this study can provide additional insights around the issue of EHS use for stroke in this area. As alluded to in Chapter Five, three key themes were represented by the data as well as several subthemes. These included the decision-making process, experiences of care, and perceived gaps and areas in need of further support. There was discussion surrounding the decision-making processes among both patient and caregiver participants, including an EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 251 extensive discussion around barriers and facilitators for seeking emergency medical attention for stroke. Interestingly, there was overlap and interconnectedness between some of the subthemes of both barriers and facilitators related to the decision to use EHS for transport to the hospital. These included the following themes: the perception of symptom seriousness, an awareness of the F.A.S.T. campaign, and having a caregiver or bystander present at the time of experiencing symptoms. Decision-making Process for Seeking Emergency Medical Care During the interviews, both patient and caregiver participants described their decision-making process that included ‘sense-making’ and more specifically the process of recognition, interpretation, and negotiation in their path of deciding on a course of action following stroke. Some aspects associated with being barriers to a positive EHS response (e.g., not calling for an EHS) were common among participants. These included having a knowledge gap, experiencing symptoms that were not consistent with those covered in F.A.S.T., the perceived seriousness of symptoms experienced, having a caregiver or bystander present at the time of symptom onset, one’s geographical proximity to the hospital at the time of stroke, prior contact with a primary care provider, and the unwillingness of the patient to seek care, including due to prior negative experiences with the healthcare system. In the case of stroke, there appeared to be an interplay of factors explaining individual responses to using EHS. For example, in this study, there was evidence of knowledge gaps among more than half (n=7) of the patient participants interviewed. This lack of symptom awareness was indicated by not knowing the signs of a stroke, confusion of stroke symptoms with those of heart attack, and not understanding the recommended course of action in response to stroke symptoms (i.e., seeking immediate emergency medical attention and EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 252 calling for EHS). While for others, it was clear that while there was knowledge of stroke symptoms, this did not translate into the action of seeking emergency medical attention either by calling for EHS or going to the ED. The existing evidence surrounding stroke awareness and knowledge is generally inconclusive. There does, however, appear to be a knowledge-to-action discordance captured within the literature in which previous knowledge or awareness of stroke is not associated with reduced presentation delay or greater use of EHS. For example, a qualitative study undertaken by Kitko et al. (2008) used grounded theory to explore the decision-making process concerning treatment-seeking behaviours for acute stroke. They found that late patient presentation was associated with a lack of knowledge of stroke symptoms. Conversely, Kitko et al. (2008) also found that having experienced a previous stroke or having an awareness of stroke signs and symptoms was associated with an earlier presentation to the hospital. Related to this theme of knowledge, there was discussion in this study among both patient and caregiver participants about awareness and knowledge of health campaigns, including F.A.S.T. when recalling their experience of stroke. Some credited the F.A.S.T. advertising with helping them recognize the signs and symptoms of a stroke. Others felt that the F.A.S.T. campaign did not go far enough in spreading awareness of stroke symptoms. For example, among participants who were aware of F.A.S.T., there was specific criticism of the advertisements not referring to headaches as a potential symptom of stroke. This has been previously documented as one of the limitations of the F.A.S.T. campaign as the symptom of sudden onset headache is not covered in the F.A.S.T. messaging (Lisabeth et al., 2012). This EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 253 is despite nearly one-third of stroke patients reporting headache as one of their primary symptoms at stroke onset (Lisabeth et al., 2012; Tentschert et al., 2005). There has been previous research that has explored the impact of the F.A.S.T. campaign. It has been evaluated for its effectiveness with mixed results. Studies have specifically examined its impact on increasing awareness of stroke symptoms, improving symptom recognition, and to a lesser extent its role in decreasing patient presentation delay. However, mixed results have been uncovered. For example, Robinson et al. (2012) conducted a study to assess the public knowledge of stroke and transient ischemic attack symptoms and awareness of the content presented in F.A.S.T. in Leicester, U.K. Participants included 1300 members of a mixed rural, urban, and multiethnic population that were sampled from public areas, including places of work and schools. Main outcome measures included knowledge of the terms ‘stroke’, ‘stroke risk factors’, and the ‘F.A.S.T. campaign’ as well as an awareness of stroke symptoms and the ability to correctly distinguish between stroke and non-stroke symptoms. In the study by Robinson et al. (2012), 70% of the respondents were aware of the F.A.S.T. campaign, with the highest levels of symptom recognition present among older, white, and female populations. While significantly lower levels of recognition were observed among minority ethnic populations. There was also poor recognition of other stroke signs, including leg weakness, and vision loss, with males being more likely to report non-typical stroke symptoms, such as chest pain or arm/leg pain, as being associated with stroke. Similar findings have been reported by other studies that have examined pre-and post-campaign stroke awareness in large populations (Bray et al., 2011; Grilli et al., 2002; Rasura et al., 2014; Trobbiani et al., 2013; Wall et al., 2008). While the sample in this phase of the study was not sufficient to explore racial and ethnic differences EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 254 related to stroke awareness and knowledge, these findings may help explain findings in Phase A related to low EHS use for stroke in the Richmond HSDA. Furthermore, this presents an opportunity for future stroke-related research in this region. In this study, in addition to having knowledge of stroke symptoms and an awareness of F.A.S.T., other factors were also identified as being important aspects of the decisionmaking process to seeking emergency medical care. Interestingly, the presence of a caregiver or bystander was found to be both a facilitator and a barrier to seeking prompt emergency medical attention and calling for an EHS in an acute stroke event. For some, caregivers were an important factor in encouraging a timely call for EHS. Conversely, in other instances, caregivers relied on the judgment of the individual experiencing stroke to seek care, and in some cases, this resulted in delays in seeking prompt medical attention. These findings are consistent with other research that has investigated the impact of caregiver and bystander effects on decision-making in stroke. For example, Moloczij et al. (2008) found that at times the presence and influence of another person can contribute to delays in seeking help. Likewise, Wein et al. (2000) found that only 4.3% of cases were the call for EHS made by the patient. A far greater amount of the time the use of EHS was initiated by a family member or significant other 60.1% of the time, followed by a paid caregiver 18.4% of the time, and finally 12.9% of calls were made by a co-worker or bystander. This highlights the importance of expanding stroke symptom awareness to the greater public domain, instead of only focusing on those at the highest risk of a stroke event. In this study, individuals who lived in more rural locations, as observed in Phases A and B, or closer to the hospital, as observed in Phase C, were less likely to call for EHS. Similar findings have been documented in the literature where the location of symptom onset EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 255 has been found to impact the use of EHS. For example, lower use of EHS has been observed among rural-dwelling populations (Ekundayo et al., 2013; Moreira et al., 2011). For example, Moreira et al. (2011) compared EHS use between urban and rural populations. They found that urban-dwelling individuals were more likely to call for EHS than those who lived in rural areas. In addition to rural residence, proximity to the hospital has similarly been identified as a key factor impacting EHS use. Ashraf et al. (2015) also found that those who lived in closer proximity to the hospital, or less than 15km, were more likely to use EHS. Greater use of EHS also occurred for those who had strokes outside their home, such as at work (Adeoye et al., 2009). As such, this may indicate the important influence of bystanders or individuals when deciding to call for EHS and highlights the importance of extending stroke awareness to a broader audience. Experiences of Care In this study, participants reported a range of experiences in three key areas, including pre-hospital care, emergency care, and inpatient care. In this study, some (n=3) participants, felt the care they received from EHS providers was inadequate. Particularly participants who self-identified as belonging to marginalized populations reported feeling that their symptoms were not taken seriously and that they were repeatedly questioned about their alcohol consumption. This is concerning given how these perceptions from care providers may delay or impede access to time-sensitive emergency stroke care and the potential impacts on patient outcomes as a result. In Canada, marginalizing conditions include eroding safety nets, rising income inequality, historical and ongoing colonialism and racism, and stigma and discrimination against those with disabilities, mental health challenges, and issues with substance use EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 256 (Raphael, 2015; Saposnik et al., 2008). Most recently, a report commission by the BC government explored the issue of Indigenous-specific racism and discrimination in BC’s healthcare system (Turpel-Lanfond, 2020). The report was in response to allegations of racism in BC EDs which surfaced in June 2020. The review found extensive profiling of Indigenous patients based on stereotypes of addiction. Perhaps most troubling was the impact of racism in limiting access to medical care, including primary care and emergency services, leading to negative effects on the health and wellbeing of Indigenous patients. Marginalization most often affects Indigenous populations, racialized newcomers, and people with pre-existing chronic conditions, including mental health and substance use disorders, and can affect access and experiences of care (Browne et al., 2015; Raphael, 2015; Ford-Gilboe et al., 2018). This results in critical issues related to access and provision in healthcare and leads to disparities in health outcomes (Browne et al., 2015; Turpel-Lanfond, 2020). Being of lower socioeconomic status has been associated with a higher incidence of stroke, an increased prevalence of chronic diseases, and reduced access to care for a variety of conditions (Cox et al., 2006; Kleindorfer et al., 2006b; van Rossum et al., 1999). Some studies have demonstrated that there is a higher stroke case fatality with lower socioeconomic status (Arrich et al., 2005; Kapral et al., 2002; Saposnik et al., 2008; Zhou et al., 2006). Not surprisingly, the role of implicit bias, stigma, and racism has also been investigated for its role in contributing to health disparities (Blair et al., 2011; Braveman, 2014; Zestcott et al., 2016). Research, including a recent systematic review by Fitzgerald and Hurst (2017), found that healthcare professionals exhibit the same level of implicit bias as the general population. Some studies have found that racial disparities in access to acute stroke EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 257 treatment can be attributed to differences in insurance coverage, potential racial bias by providers, and the relatively small number of minority physicians available to provide care to these populations (Blanchard et al., 2003; Cruz-Flores et al., 2011). While in this study, it was not possible to ascertain whether bias or racism was the primary driver behind some of the more challenging and difficult experiences participants shared concerning their stroke care, it is entirely plausible that these factors played some role. This is concerning as bias and stigma can have an important impact on the course of treatment and care offered to patients, often resulting in delayed access to care and further marginalizing those belonging to highrisk and vulnerable groups. Given that stroke is a time-sensitive medical emergency, the clinical environment is generally fast-paced and involves multiple healthcare practitioners working in parallel. In this study, most patient participants (n=9) who participated in the interviews were treated and discharged from the ED. While it was not possible to examine stroke-related morbidity and mortality for the stroke patient population in this area, in part given the limitations of the dataset and variables collected, this problematic given that previous research undertaken in Alberta, Canada found that stroke-related disability and mortality are higher among patients treated in rural EDs as compared to EDs located in urban centres (Yiannakoulias et al., 2004). Given that the majority of EDs in the Northern Health region are located in rural regions, exploring the possibility of providing more evidence-based and streamlined stroke care through a formal stroke unit model in this region is warranted. Finally, there was a discussion in this study about the need for improvement concerning the involvement of caregivers in the stroke journey. For example, some participants reflected on the ‘revolving door’ in healthcare, while others discussed the EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 258 process of consenting to the administration of thrombolytic therapy. In both instances, patient and caregiver participants felt that involving caregivers in the discussions and process of care could help improve the care experience. While traditional means of healthcare delivery, including the medical model, have typically employed a more paternalistic approach (Mead & Bower, 2000; Cott et al., 2007) the inclusion of caregivers and survivors in decisionmaking in this study was viewed positively. This finding is reflected in previous research where involving patients and caregivers in stroke care has been shown as a means to deliver more patient-centered care (Grant et al., 2004; Han & Haley, 1999; Lawrence & Kinn, 2013) and increase patient experience satisfaction. While challenging to address in time-sensitive medical emergencies, moving towards a more patient-centered approach could help address some of the tension some patients reported experiencing when receiving care in fast-paced clinical environments such as the ED. Perceived Gaps and Areas in Need of Further Support While the focus of this work was on the use of EHS for stroke, participants were asked an open-ended question at the end of the interview about whether there was anything they would like to include that may have been missed. At this time, many took the opportunity to reflect on areas they perceived as gaps in their care. It was apparent through these discussions that there were some unmet areas of need as reported by patient participants and their caregivers. Commonly discussed aspects included mental health services, rehabilitation needs, stroke education, and caregiver supports. Many participants (n=8) and some caregivers (n=3) mentioned that a need for mental health supports post-stroke. Most felt that their mental health needs and concerns post-stroke went largely unaddressed. Some commented on how physical aspects of stroke recovery EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 259 were supported whereas psychological supports were non-existent. While some were more proactive in trying to obtain mental health supports, many but reported feeling that their requests were not taken seriously, while others were not deemed ‘sick enough’ to meet eligibility criteria to receive services. Similar to patient participants, caregiver participants also mentioned the need for mental health supports. Caregivers felt that there were challenges in providing care to their loved ones and that there was little support available to them to address their concerns. Encouraging the wider uptake for the incorporation of mental health services in after-stroke care among the medical community, including screening in primary care settings coupled with greater investment in mental health services, would help to address this important yet often overlooked post-stroke complication. This identified need for greater mental health supports is reflective of what is currently documented in the literature. Mood disorders following stroke, including depression and anxiety, are common (Canadian Stroke Best Practices, 2018; Hackett et al., 2005; Towfighi et al., 2017; Powers et al., 2018). Research has demonstrated that having a stroke increases the risk of anxiety, depression, and sometimes both disorders together. It is estimated that anxiety, characterized by a focus on worry and concern, affects about 20% of stroke survivors (Powers et al., 2018). Whereas, depression, characterized by feelings of overwhelming sadness, a lack of pleasure in activities previously enjoyed, and/or changes in physical activity and eating patterns, affects between one to two-thirds of stroke survivors (American Stroke Association, 2018). Post-stroke depression is a common complication of stroke. It is estimated that poststroke depression occurs in one-third of all stroke survivors (Hackett et al., 2005; Towfighi et al., 2017) and it is associated with poor functional outcomes (Kutlubaev et al., 2014) and EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 260 higher mortality (Bartoli et al., 2013). As such, the Canadian Stroke Best Practices (2019) primer on Mood, Cognition, and Fatigue following Stroke, suggests that all people who have experienced stroke should be considered at risk for post-stroke depression and be provided with resources. It is also recommended that all stroke survivors be assessed by their primary care provider for depression post-stroke, given that it is medically appropriate. This is important as depression negatively impacts patient outcomes and is associated with increased morbidity, mortality, and poorer functional recovery following stroke (Loubinoux et al., 2012; Robinson & Jorge 2015). In this study, some participants felt like their needs for post-stroke rehabilitation were not met. For example, some felt that their deficits were not deemed to be ‘serious enough’ to warrant rehabilitation, while others felt that the level of rehabilitation services offered was not enough. Still, others felt that while the physiotherapy supports they were offered were adequate, there was a lack of dedicated occupational therapy supports. One caregiver also further explained the importance of occupational therapy and how it would be helpful in post-stroke adjustment with activities of daily living. Stroke is a leading cause of adult disability. It is estimated that over 400,000 people are living in Canada with stroke-related disabilities (Kruger, 2015). Early and targeted stroke rehabilitation is a key evidence-based component of stroke care (Canadian Stroke Best Practices, 2018). Early and consistent rehabilitation is recommended for all stroke survivors. The Canadian Stroke Best Practices (2019) recommends that all patients admitted to hospitals with stroke should have an initial assessment conducted by rehabilitation professionals as soon as possible after admission. Taking advantage of the potential of EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 261 neuroplasticity early on post-stroke should be capitalized on to maximize recovery and improve post-stroke quality of life. While recommendations for post-stroke rehabilitation exist (Canadian Stroke Best Practices, 2018), there are considerable challenges associated with the delivery of these supports. Rehabilitation and associated supports, including physical, occupational, and speech and language therapy supports remain sparse and fragmented across the Northern Health region. For example, there are no dedicated stroke rehabilitation programs and the majority of existing general rehabilitation resources are offered at the regional centre with fewer supports available to outlying areas. A combination of factors, including chronic human health resource challenges, (e.g., recruitment and retention of allied health providers), funding limitations, and geographical barriers, challenge the delivery of these supports for the stroke survivor population on a uniform basis across the region. The supports and services available to those in need at the regional centre also remain chronically underresourced, resulting in delays and fragmented access. This often translates into providers making referrals to larger tertiary centres where such services are more readily available. While this referral-based access to outlying centres fills an important gap, this often comes as a substantial burden to stroke survivors and their families and can further widen inequities for the already marginalized. For example, those requiring specialty services must endure enormous out-of-pocket costs associated with having to travel large distances to receive care, including transportation, accommodation, and loss of income due to time off work. This burden of having to travel for healthcare was a sentiment echoed by participants interviewed for this study. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 262 Furthermore, while virtual and telehealth-based alternatives have demonstrated effectiveness for other conditions, such as the management of chronic diseases (Jones et al., 2014), the evidence to date surrounding telerehabilitation for stroke remains of low or moderate quality (Laver et al., 2020). As such, this makes it challenging to reach a concrete conclusion about the effects and impact of the potential for offering this service to stroke survivors (Laver et al., 2020). For the time being, existing evidence supports the notion of providing greater access to in-person services closer to home. In this study, there was a gap reported within the context of stroke education surrounding the ‘acute stroke event’ as well as a need to better understand what to expect in the post-stroke journey in terms of outlook and recovery. There was discussion about a need for education for stroke from various perspectives, including at the health system and provider level, at the patient level, and the caregiver and community level. At the health system level, there was a perception of not having a similar level of supports that a more well-resourced facility would have. Patient participants and caregivers felt they were not provided adequate information. This prompted some to engage in various forms of information-seeking behavior, including accessing the Internet, speaking to their primary care provider, and searching out community groups and supports. Stroke survivors are at heightened risk for a recurrent event within the first five years (Caplan, 2016). For example, it has been estimated that the risk of stroke recurrence is 19.4% in the first five years (Stahmeyer et al., 2019). Therefore, there is a need for education for patients with previous stroke or transient ischemic attack concerning the importance of secondary prevention. This education should include aspects such as medication adherence, maintenance of a healthy lifestyle, and strategies for overall risk reduction (Canadian Stroke EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 263 Best Practices, 2018). It is important to note, however, that all education and resources must come in a simple and easy-to-understand format to maximize uptake. The Canadian Stroke Best Practices (2019) stresses that education for stroke, including for those experiencing stroke, their families, and caregivers, is an integral part of stroke care that should be provided at all healthcare encounters. Stroke education presents an important area of intervention as providing verified, high-quality information resources to patients and their caregivers. The proliferation of online sources, many of which include misleading, inaccurate, and potentially harmful health information can pose serious health risks (Khan & Idris 2019). Empowering patients by providing accessible and reliable information can help alleviate some of the stress and strain of feeling overwhelmed by the changes a stroke event can bring as well as bring benefits to the health system through reducing unnecessary hospital admissions. This highlights the need for a more holistic approach to stroke care including greater attention to emotional and psychosocial supports. For example, a qualitative descriptive study by Green and King (2009) explored the experiences of male patients and their female partner caregivers in the year following a stroke. In this study, findings supported the notion that recovery is a multifaceted process that requires a biopsychosocial approach to health and follow-up care. Possible solutions to addressing this gap in care expressed in the current study include offering stroke and transient ischemic attack education clinics, which currently exist in every regional health authority, except Northern Health. Offering educational counseling informed by a motivational interviewing and stages of change approach has been identified to be effective in facilitating active changes in lifestyle behaviors in stroke survivors (Green et al., 2007; Holzemer et al., 2011) EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 264 Caregivers play an important role in facilitating the recovery and caring for stroke survivors. They assist without financial compensation and contribute to the sustainability of healthcare systems by reducing or preventing the need for facility-based care (Kokorelias et al., 2020). Often caregivers are members of the survivor’s family and can include spouses or adult children who assist with the activities of daily living for survivors living at home. The importance and role of caregivers were evident in this study. For example, while the focus of this work was on stroke survivors and their experiences and decision-making, some patient participants indicated that they would like to have their caregivers also present. As a result, seven caregivers, including six females and one male took part in the interviews alongside patient participants. The greater proportion of female caregivers is in this study is consistent with existing literature on this topic that has found caregiving responsibilities following stroke are predominantly shouldered by females (Kokorelias et al., 2020; Menon et al., 2017). While I examined the interview data for insights related to sex and gender-related to caregiving roles, nothing specific to this emerged from the data. Rather in the interviews, caregiver participants often reflected on a greater need for caregiver supports as opposed to needs specific to their sex or gender-based roles. Some expressed a need for greater strokerelated education, while others felt there was a need for assistance with more practical tasks or psychosocial supports. For example, some may require support to mobilize or engage in hygiene practices, while others may require help with eating and feeding or transportation (Balasooriya-Smeekens et al., 2016). Providing care for someone following a stroke can come with enormous changes to the caregiver’s lifestyle and other psychosocial impacts that are often not considered to their full extent. For instance, numerous studies have found that EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 265 family members often experience depressive symptoms associated with their caregiver role, with rates estimated to be anywhere from 34% to 55% (Grant et al., 2004; Han & Haley, 1999; Nieboer et al., 1998; Pohjasvaara et al., 2001), often peaking within the first three months of stroke survivors return home (Kotila et al., 1998). As such, addressing the needs of caregivers and providing the required supports and resources should be considered an essential component of providing comprehensive stroke care. Overall, the qualitative findings provided some unique insights related to EHS use, as well as broader perspectives of stroke care within the NH region. Similar to the findings of Phases A and B, the qualitative findings highlight the complex nature of stroke care within rural and northern settings and the importance of context-specific inquiry as a means of understanding and optimizing stroke care. The next section presents the strengths and limitations of this work. Implications for future research, practice, and policy are presented in some detail. Finally, recommendations arising from the findings of this study are made. Study Strengths and Limitations. While this work provides a better understanding of stroke care and the decision-making process around the use of EHS for stroke patients in northern BC, there are some important limitations to consider. Most importantly, the use of administrative health data can be a challenging undertaking and be affected by many impacting factors such as impaired data quality due to gaps in the collection of data, missing variables, and data handling at the organizational level. Similar issues were also present in the current study, which I was able to resolve and ensure the accuracy of the data by working with analysts at Population Data BC. Issues included having to remove a large number of duplicate entries from the dataset which increased the potential for error and needed to be mitigated by rechecking analysis and comparing to known stroke volumes in BC based on EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 266 previous work by SSBC. There was also a problem of unlogged or missing cases due to an error in the source file from the Ministry which was resolved through starting data cleaning and analysis over once the error in the source file was identified. Finally, it is recognized that the strategy to managing data using Excel in the current study, including data cleaning (i.e. the manual removal of duplicate cases) and the recoding of variables of interest, may have introduced new threats to validity. To mitigate these threats in future research, all data should remain intact and be managed within the base file in a statistics program such as SPSS, where possible. For example, in accordance with best practices for data management, duplicates should be removed and data recoded (i.e. using the transform function) in SPSS. There were also a number of other challenging learnings throughout this process which highlighted some of the tensions with exploratory multi-method, rural health services research. For example, not having previous work in this area to base decisions on when deciding how to present findings for variables such as thrombolysis. Despite these challenges, the strength of this research lies in the use of its multi-method approach, which included using two different large-scale, multi-year administrative datasets, in addition to qualitative inquiry to uncover contextual insights for stroke-related EHS use. There are certain limitations to keep in mind when considering the findings of this study and each is outlined below by phase. Phase A. The data analyzed in this phase was limited to individuals presenting through the ED with symptoms of stroke and stroke as their primary diagnosis. As such, the experiences of individuals who experienced a stroke as inpatients, those who reside in longterm care, and those who experienced a stroke as a secondary diagnosis were not captured. Furthermore, while this includes a large proportion of stroke patients within BC, studying EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 267 stroke in other populations, such as those in long-term care, may yield unique and important insights as well as capturing the experiences of those discharged and treated in EDs or those who died before admission to the hospital. Finally, it is recognized that with the removal of a large number of duplicate entries from a dataset, there is potential for errors. To mitigate this, checks were undertaken including rechecking and comparing to known stroke volumes based on the case-finding definition and previous work by SSBC and through conversation with data analysts at Population Data BC. Phase B. This exploratory investigation into transport practices and the impact on times to treatment was limited to patients presenting to six of the 18 acute care facilities in the Northern Health region. While this was done from a pragmatic perspective given the objectives of this study and outcomes of interest, it is possible that the journeys captured were not entirely representative of those with stroke in the region. This includes the experiences of individuals who experienced a stroke as inpatients, those who reside in longterm care, those who experienced a stroke as a secondary diagnosis, those presenting to the remaining 12 Northern Health facilities (especially those who, despite having bypass protocols in place, were not transferred to a site with neuroimaging). Further, due to the dataset being drawn from the DAD, the data from individuals presenting to and being discharged from the ED (without being admitted to an acute care ward) are not captured. Additionally, limitations in the data available for this work, meant it was not possible to determine times for assessment and treatment. As such, this provides an important window of opportunity for improvement in the collection of administrative health data to better inform stroke care in this region, including capturing time to treatment. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 268 Finally, as in Phase A, it is recognized that with the removal of a large number of duplicate entries from a dataset, there is potential for errors. In addition to this, as stated in Chapter Three, learnings around coding and recoding of variables and the creation of tables in Excel to import into Word were valuable lessons obtained during this training experience. To mitigate these potential threats, checks were undertaken including rechecking and comparing to known stroke volumes through conversation with data analysts at Northern Health HIMS, asking for committee feedback and direction, and an independent review and check of the analysis to ascertain the accuracy of the analysis and reporting of the findings. Phase C. While EHS use was quantitatively examined on a provincial and regional scale, the interviews to better understand the decision-making process around EHS use were only undertaken at a regional level. This means that it was not possible to explore or compare patient-associated reasons behind the decision to use EHS across the province. This was a conscious decision taken from a feasibility standpoint, but also equally because the core interest for this work was around the complexity, variation, perceived underuse of EHS in rural and northern BC. Traditionally, much of northern BC has not been part of large provincial stroke care quality improvement initiatives, including the 2011 BC Stroke Collaborative, with decision-makers and teams citing the complexity of northern BC and the delivery of health services as a barrier and complicating factor. The inclusion of patient perspectives helps to address this gap, but further research is needed. Furthermore, the qualitative component of this study was limited to English-speaking patients presenting and/or having received care at any of six of the 18 acute care facilities in Northern Health. As such, it is possible that the experiences shared by the participants in this study may not be reflective of a more diverse group of patients, including those of non- EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 269 English speaking backgrounds or those residing in more rural and remote isolated areas of northern BC, who may not have been transferred from a community hospital to a larger facility with neuroimaging services. In addition to this, given the focus of this study, it was not possible to recruit and include those who did not seek emergency care for stroke. However, saturation was achieved in the sample of interviews that were conducted. Finally, the interviews relied on patient and caregiver recall for accurate reporting. As such, there is a potential for recall bias in the results obtained. Recruitment was initially limited to survivors with stroke in the last two years, to minimize the potential for recall bias. However, many participants who contacted to inquire about participation in an interview were more than two years past their stroke event but were keen on sharing their experience. Therefore, after consultation with my supervisory committee, the eligibility criteria were amended to stroke within the last five years to respond to the interest in the study. Despite these limitations, this work addresses a critical need to explore and better understand stroke-related health service delivery particularly as it relates to prehospital and EHS care. Overall, each phase of this study provided unique insights. Phases A and B provided quantitative findings that identified areas of low EHS use which lay a foundation to better understand stroke-related EHS use provincially and regionally. In addition to these quantitative phases, Phase C, through the use of qualitative interviews with stroke survivors and their caregivers, contributed to a better understanding of some of the contextual pieces and factors associated with decision-making during an acute stroke event and subsequent stroke-related EHS in BC, and more specifically in the Northern Health region. Taken together, these findings provide a better understanding of the patterns of EHS use in northern BC for stroke. In addition to providing a foundational understanding of this previously EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 270 underexplored area of health services, the findings from this study provide space for recommendations for future research, practice, and policy. Recommendations This work is especially relevant within rural, remote, and northern contexts where populations typically experience worse health outcomes and remain chronically underserved (Fleet et al., 2018; Hanlon & Halseth, 2005). It is hoped that the findings from this research will help provide insights to help guide improvements in care, including refining services that are responsive to population needs and improving patient outcomes. It is also anticipated that this example of using an IKT lens to conduct this work, as enacted by the engagement of researchers and knowledge users in the research process, will generate further interest. Finally, it is expected that this research will provide a foundation for researchers, community members, knowledge users, and decision-makers to work together to continue to strengthen the knowledge base in this area and improve stroke care. Several key recommendations can be made from this research. As Thorne (2008) suggests, simply proposing that similar studies be conducted to validate the results of the current study would not suffice. As such, using a qualitative descriptive approach is used to move the work further and provide practical recommendations. The following section provides recommendations for the research community, healthcare providers, and those working in the field of health policy. Each of these is summarized in detail. Recommendations for Research It is known that complex factors related to transportation and health human resource challenges mean many rural, remote, and small urban hospitals are often unable to meet evidence-based and best-practice clinical care guidelines for the treatment for acute stroke care (Bayley et al., 2008; Coutts et al., 2015). However, what this looked like for northern EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 271 BC before this study remained largely unknown. As such, this study has addressed a clear knowledge gap related to EHS use for stroke in BC, and more specifically in northern BC. It has contributed provincial and regional level insights into stroke-related EHS use, as well as identified possible barriers and facilitators at the patient and caregiver level to initiating the use of EHS. At the same time, several questions remain unanswered such as what stroke care may look like in more rural and remote regions of northern BC or how residents in these areas may access stroke treatment. As such, there is a need to consider how diverse voices are engaged in research and that intersecting barriers are identified and addressed. A possible next step in this building on this research would be for future studies to explore barriers and facilitators to the use of EHS in communities other than the six identified in this work, including province-wide. Extending the focus of this work would provide a more comprehensive understanding of the challenges of access to EHS provincially by understanding how barriers and facilitators may vary by community size, demographics, and region. For example, in Phase A of this work, it was surprising to discover that the Richmond HSDA, despite being a large urban site, had stroke-related EHS use comparable to underserviced rural and remote regions. Uncovering potential factors that may prevent more widespread EHS use among this population by using community-based approaches could help inform more targeted initiatives to improving rates of EHS use, both stroke-related and for other emergencies, in this area. Moreover, adopting a framework such as ‘knowledge-to-action’ cycle (Kitson et al., 2009; Kitson & Straus, 2013; Straus et al., 2010) to guide future work, including intervention-type studies to address the issue of EHS for stroke could help ensure research is adopted into practice and that there is a continuous feedback process to guide system-level improvement. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 272 Further, while the generalizability of stroke protocols and practices is limited due to differences in national and regional EHS structure, as well the variations in EHS providers training, experience, and contextual factors (Dick et al., 2003; Sikka et al., 2005), it is important to refer back to the clinical catchphrase “time is brain”. Any reduction in time along the stroke care pathway, regardless of how small, should be considered meaningful due to the time-sensitive nature of this serious medical emergency and the potentially serious implications of treatment delays (Saver et al., 2010). Therefore, it is suggested that future research further examine the impacts of these time-to-treatment reductions on long-term patient outcomes, including 30-day, 90-day, 12-month mortality, as well as the impact on long-term functional outcomes and quality of life. Further, given that the literature supports the practice of prenotification in large stroke centres (Abdullah et al., 2008; Bae et al., 2010; Patel et al., 2011; Lin et al., 2012; Hsieh et al., 2015), future studies should investigate whether there are similar impacts of prenotification on improvements in care for facilities without formal stroke units or care teams. Additionally, future research should take steps to explore the perspectives of diverse participants with stroke and their caregivers residing in small rural and remote communities across northern BC. In particular, such an investigation could provide key insights into those who present at smaller acute care facilities and may require inter-facility transfers. This includes those that were not transferred for a higher level of care, those treated and discharged from EDs without being admitted to the hospital, as well as those residing in long-term care residences. Such research could yield valuable insights to inform programming needs for this region and provide important lessons with transferability to other rural, remote, or health resource-poor environments both in BC and beyond. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 273 While this study was not able to address ethnic and racial differences, these differences may potentially explain some of the variability in EHS use found. In 2011, the AHA/ASA (American Stroke Association) scientific statement noted that there were key ethnic and racial disparities in the receipt of stroke care (AHA, 2011). While the evidence that exists shows mixed results, there is general evidence, although not universal, of differences in receipt of care in stroke among racialized populations, specifically Black patients (Green et al., 2019). Given that we live in a time of increasing globalization, and a nation that is comprised of people from various backgrounds, ethnicities, and cultural perspectives, it would be a logical progression to explore the experiences of patients representing different cultural and ethnic groups with regards to seeking emergency medical care for stroke and accessing services. Undertaking greater investigation with the racial and ethnically diverse populations would allow for a more complete understanding of the needs of these populations and ensure that the healthcare services delivered are responsive. This could help address some of the racial inequities that are present in the receipt of stroke care. In addition to this, more focused investigations on Indigenous and other high-risk and priority populations, including gender-diverse individuals, long-term care residents, and minority populations are also recommended. Further, understanding the experiences of seeking stroke care among individuals belonging to low socioeconomic backgrounds is important. Exploring the current state of the healthcare system and focus on treating diseases and illnesses as standalone problems, can make it very challenging to receive coordinated care. These challenges can be heightened for those belonging to marginalized groups, minorities, and for those that face barriers when accessing and navigating the healthcare system without the skills, connections, or advocates to help them navigate the experience of EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 274 care-seeking. While not a focus of this study, the interviews yielded experiences of bias and stigma, particularly among those with Indigenous backgrounds or younger individuals that were often repeatedly assumed to be using alcohol or other substances. This negatively impacted their experiences of care and in some cases contributed to delays in receiving more timely access to stroke care. There is no shortage of literature and anecdotal evidence examining the systemic racial profiling, stereotyping, and mistreatment of Indigenous Peoples within Canada (Truth & Reconciliation Commission, 2015) and the Canadian healthcare system (Browne & Varcoe, 2006; Matthews, 2017; Varcoe et al., 2019). Investigating the decision-making and experience of seeking emergency medical care concerning stroke could uncover additional health system barriers that these particular populations face and help address ways to promote and support sensitive care for these groups. Furthermore, despite the epidemiological evidence demonstrating that more females are impacted by cardiovascular diseases, traditionally, the majority of research has focused on males, particularly Caucasian males (Norris et al., 2018). As such, the experiences of females have remained largely unknown, whether that be an exploration in sex-specific risk factors, health-seeking behaviors, symptoms, or healthcare needs and experiences. Moreover, as previously noted, existing evidence on these topics has been inconsistent. Recently, there has been a push or recognition of the need to highlight females being under-researched, under-diagnosed, and undertreated in the field of cardiovascular health (Heart & Stroke Foundation of Canada, 2018). While the findings related to the sex-based analysis of stroke care were largely statistically insignificant, this work provided an exploratory sex-based examination for EHS use and stroke indicators. As there is still much that remains unknown, EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 275 future research should continue to explore stroke care from both sex and gender-based perspectives. Understanding the interplay of biological sex and gendered factors could help improve patient care and outcomes for a wider range of the population (Bushnell et al., 2018; Heart & Stroke Foundation of Canada, 2018). Finally, it is worth noting the impact of the evolving COVID-19 pandemic that has impacted millions of people worldwide. Although the data used in this study predate the onset of the pandemic, there are potential implications of this virus for the field of stroke research. Though thought to be primarily a respiratory illness, there have been several early reports suggesting that the severe acute respiratory syndrome virus 2 (SARS-CoV-2) can lead to a hypercoagulable state and result in a higher rate of thrombotic complications (Helms et al., 2020; Zhang et al., 2020). Interestingly, at the onset of the pandemic, there were reports of a drop in the number of patients presenting early and the number of patients presenting at all with stroke to the hospital (Bersano & Pantoni, 2020; Hoyer et al., 2020). There was no reason to expect a decrease in stroke incidence instead, the opposite could be assumed given the known effects of SARS-CoV-2 on the coagulation cascade and the likelihood of an increase in thromboembolic events (Klok et al., 2020). Therefore, it was hypothesized that the drop in stroke admission was a consequence of public fears of SARS-CoV-2. This prompted the development of protected stroke codes and protocols and led to a concentrated messaging campaign encouraging people to seek medical attention for emergencies such as stroke (Hoyer et al., 2020). As this pandemic is still actively unfolding, the impacts and evidence for stroke are emerging, the full scale of which shall remain unknown for some time. However, the trend of fluctuations in stroke patient presentation to hospital during this pandemic highlights the need for even greater investment in stroke research to ensure that EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 276 patients feel safe seeking prompt medical care and are supported throughout their stroke journey. Recommendations for Practice It is imperative to move beyond a one-size-fits-all approach to the management of stroke. While the development of stroke shares common risk factors and symptoms, stroke does not affect each individual in the same way. As such, there is a critical need for consideration of factors, including sex, gender, socioeconomic status, race, geography, resource availability, and other social determinants of health in planning for the delivery of health services, including stroke prevention, acute stroke management, and post-stroke care. In addition to health service delivery, there is a need for greater attention to be directed towards guidelines for diagnosis, care, and management. For example, those involved in creating clinical practice guidelines have yet to include a systematic, consistent, and comprehensive approach to incorporate regional and contextual considerations or sexspecific recommendations. To truly improve the quality of stroke care, there is a need for greater consideration of diverse geographies and variations in health system resources and access to services as well as the incorporation of sex and gender-specific differences in clinical guideline development (Norris et al., 2019). Second, an important next step would be to work with BCEHS to strengthen the implementation of stroke bypass protocols. This would allow all incoming or suspected ‘hot stroke’ patients to proceed directly from the EHS to the CT scanner and then provide education to frontline staff, including paramedics and staff in the north. This practice of prenotification and transport direct to CT on the EHS stretcher has been demonstrated to dramatically decrease treatment delays (Meretoja et al., 2013). Other potential solutions to EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 277 addressing the challenge of improving time to CT could revolve around internal processes such as giving ED physicians greater autonomy to call for a CT without having to consult with their radiologist colleagues or complete administrative paperwork before imaging. Still, other changes could include streamlining the care pathway by limiting the number of patient demographics required to be collected before the ordering of a CT scan. Finally, a more immediate recommendation would be to improve the accuracy of documentation and charting, as demonstrated by the variations in unknown stroke type across health regions and facilities. Such changes may seem minuscule on their own, however as research in organized systems of stroke care has demonstrated, it is these very changes that can make the largest difference in terms of increasing access to treatment and limiting the extent of brain and tissue necrosis (Canadian Stroke Best Practices, 2018). There is also a need for greater education for all health professionals, including physicians and nurses, on stroke prevention as well as in-hospital management and poststroke supports. Smaller urban, rural, and remote centres often face unique health human resource shortages which can broaden the scope of practice for professionals in these areas, therefore, education must be scaled to go beyond physicians and nurses. Doing this will ensure that there is a rapid and coordinated response to a stroke, thereby limiting potential injury to brain tissue, lessening the impacts of post-stroke disability and deficits, and improving survivor quality of life. This education could potentially include training healthcare providers to identify ‘trigger’ words, as well as continuous cultural sensitivity and unconscious bias training. This could help ensure that individuals not fitting the ‘typical’ stroke patient profile, belonging to marginalized groups, or those with a history of substance use, receive the same level of timely and evidence-based stroke care. Finally, it would also be EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 278 worthwhile to provide staff with education around the importance of stroke and the need to expedite imaging, especially when individuals present via non-EHS routes. An example of this was training offered to nurses and physicians at the McGill University Health Centre ED to recognize a stroke in patients who did not arrive by EHS (Heart & Stroke Foundation of Canada, 2015). All patients were assessed by nurses upon arrival for signs of a stroke, including difficulty speaking, facial droop, weakness of the limbs, balance issues, and dizziness, regardless of their mode of arrival to the hospital. Increasing awareness of stroke symptoms among high-risk individuals and in the broader public domain is also recommended. This could be facilitated through public awareness campaigns such as the F.A.S.T. however, continuous reinforcement of messaging is needed. For example, advertising at primary care offices, workplaces, and public spaces, including grocery stores, libraries, and recreational facilities could be of benefit. It could be that while the patients and their caregivers may have received information, likely in the form of leaflets or brochures, on secondary prevention, lifestyle management, and warning signs, they did not retain the information. This retention could be affected by lack of reinforcement, (i.e., the passive approach to providing education through handing out educational materials for patients to read at their leisure) (Smith et al., 2008) during the period in which patients may be preoccupied with recovering from a stroke (Lawrence, 2009). A possible solution to this would be to provide information to patients and their caregivers once they have been discharged and returned to their place of residence. Moreover, there may be a missed opportunity to educate those at high risk of major stroke events, including those presenting with a transient ischemic attack or those living with atrial fibrillation on stroke. This could potentially include education delivered in the ED when a patient presents with a transient EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 279 ischemic attack or atrial fibrillation exacerbation (Prakash et al., 2019), in a primary care setting, or through the use of virtual delivery of health services (Lear et al., 2017). Additionally, primary care physicians and the involvement of community or peer support groups can play an important role in the dissemination of this information. Doing so would allow for continued reinforcement of key messaging. Furthermore, promoting recognition among patients and providers that symptoms other than those advertised in the F.A.S.T. campaign may be present and indicative of a stroke and highlighting to need to call for EHS is important. Due to the resource constraints that persist in some smaller communities, it is critical to provide practitioners in these areas with additional supports to assist in their decisionmaking to guide patient care. For example, there is much left to be desired in terms of the implementation of telehealth technologies in resource-poor environments (Wootten & Bonnardot, 2015). The affordability, availability, and use of technologies, including mobile devices have become mainstream. Therefore, harnessing the potential of relatively cheap telecommunications technologies, including videoconferencing and/or rapid telephone access (e.g., Rapid Access to Consultative Expertise (RACE) line) to consultation services, should be the norm in providing practitioners in small centres access to their specialist colleagues, including stroke neurology. This is especially important in medical emergencies, especially for stroke where time is of the essence and this has been documented in recent research involving BC’s rural physicians practicing emergency medicine (Kornelsen et al., 2016; Wilkinson et al., 2015). Harnessing the potential for telehealth to allow for more rapid care has been successful in other provinces with similar jurisdictions to northern BC, including northern EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 280 Manitoba and New Brunswick. Both regions have implemented and expanded telestroke services (Heart & Stroke Foundation of Canada, 2015). For example, In December of 2014, all ten CT-capable facilities in New Brunswick implemented 24-hour telestroke services to ensure emergency stroke care was available to patients across the province. Neurologists were available for rapid assessment, diagnosis, and treatment and collaboration between EHS partners, the Ministry of Health, New Brunswick Medical Association, and other key stakeholders to ensure coordination between EDs and diagnostic imaging reduced door-toCT imaging times. Finally, creating space for a greater role of nursing practice for primary and secondary prevention is recommended. For example, this could be addressed through the creation of a TIA and stroke prevention clinic, akin to the clinics present in each of BC’s four other health authorities. Adopting a regionalized approach in combination with the use of telehealth, similar to the Network of Regional to Tertiary Healthcare (NORTH) clinic (Hennessey et al., 2017), is suggested. Such an approach, modeled after the virtual heart failure and cardiac rehabilitation program offered from Prince George for those in outlying northern areas may provide a potential solution to addressing service delivery and accessibility challenges often encountered in prevention efforts. Both primary and secondary prevention through education on risk reduction and more supports for post-stroke life would be an important next step in improving some of the gaps identified by interview participants for stroke services in northern BC. Recommendations for Policy This research lends support to the use of EHS arrival for stroke. This has also been demonstrated in the literature reviewed in Chapter Two, with shorter door-to-arrival time for EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 281 patients with acute stroke who were transported to the ED using EHS (Mosley et al., 2007; Patel et al., 2011). Furthermore, the literature shows a strong association for the use of prenotification practices by EHS to receiving facilities (Abdullah et al., 2008; Bae et al., 2010; Hsieh et al., 2015; Hung et al., 2015; Lin et al., 2012; McKinney et al., 2013; Mosley et al., 2007; Patel et al., 2011; Quain et al., 2008). Important reductions in time to ED arrival, time to physician assessment, and time to CT imaging were shown. For patients with ischemic stroke, prenotification was associated with faster door-to-needle times as well as higher rates of thrombolytic therapy administration. As such encouraging greater use of EHS for those with symptoms of acute stroke is recommended. In terms of policy, mandating better access to stroke care would be a critical step in BC to ensure more equitable and timely treatment for those with stroke regardless of geography. Further, while timely stroke care is dependent on a cascade of different factors, the role, and importance of EHS and EHS providers in the stroke care pathway cannot be underestimated. In BC, the need for a patient transport system that is responsive to rural realities has also been highlighted by Wilkinson et al. (2015), in their report entitled “Rural Emergency Medical Needs Assessment”. In this report, they conducted in-depth focus groups with rural physicians which led to the identification of a disconnect between system-level planning and the realities of skills, knowledge, and abilities of rural physicians. This disconnect was seen as a means to systematically exclude rural physicians in the planning and implementation of rural patient transport which in turn stressed relationships between organizations and local providers who were increasingly frustrated with the gaps in service provision and care in their communities. These issues have been noticed at a policy level, EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 282 highlighted in the BC Ministry of Health’s 2014 report “Setting Priorities for the BC Health Care System”, and reinforced through several discussion papers on the same. In addition to building more responsive patient transport services to reflect rural realities, reducing bureaucracy, and streamlining processes of arranging for transfer may also help improve patient transport. For example, currently, in BC, the coordination of emergency transport services is overseen by BCEHS. British Columbia EHS is responsible for the operations of the BC Patient Transfer Network (PTN), and the BC Ambulance Service (BCAS) (Provincial Health Services Authority, 2015). Collectively these organizations provide pre-hospital services, emergency response, and inter-facility transport. While each of these organizations works effectively, coordination can be challenging in real-life emergencies. In the current study, the focus was to examine ground EHS use which is the primary mode of transport. Considering this complexity in the light of geographical challenges, climate (i.e., snowstorms, flooding, landslides), resource shortages, and policy. Finally, there is a critical need for decision-makers, both within the health system and those in the political arena, to make a concentrated investment to strengthen the emergency medical transportation system in BC. Policy changes to increase rural acute care paramedics and provide more advanced skills training could also help address challenges in stroke care provision. This may include increasing the number of specialist paramedics to provide ALS services which are currently only available in large centres and only in Prince George in northern BC. Second, there is an urgent need for investment into a dedicated air transportation network that goes beyond the current available BC Air Ambulance Service. As highlighted by the BC Ombudsman Report (2017), there is an inherent existence of a ‘rural EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 283 divide’ (p.10) in terms of access to and availability of emergency medical transportation services. From an acute care perspective, the wider implementation of prenotification protocols as a standard practice could work to ensure quicker access to acute stroke care in the ED. By extension, this may potentially increase the number of individuals eligible for thrombolytic therapy. In combination with ED stroke care protocols, prenotification has the potential to significantly improve time to treatment targets for acute stroke and help address the issue of poor patient outcomes. The literature surrounding the use of EHS prenotification in cases of suspected acute stroke lends strong support to the benefits associated with the practice (Mosely et al., 2007; Abdullah et al., 2008; Bae et al., 2010; Patel et al., 2011; Lin et al., 2012; Hsieh et al., 2015). Prenotification in the aforementioned studies was shown to reduce time to treatment and help facilitate earlier activation of stroke evaluation teams consequently increasing the likelihood of patient receipt of tPA (Abdullah et al., 2008; Bae et al., 2010; Patel et al., 2011; Lin et al., 2012; Hsieh et al., 2015). This is vital as thrombolytic therapy, while highly effective for ischemic strokes, must be administered within three to 4.5 hours of symptom onset for optimal outcomes and where the benefits of use outweigh the potential risks (Adams et al., 2007; European Stroke Organization, 2008). Another potential solution to improving the number of eligible patients receiving thrombolytic therapy could include the more widespread use of mobile stroke units, or ambulances equipped to administer thrombolytics en route to the hospital. The benefits associated with this alternate form of care delivery could be even greater in cases where patients reside larger distances away from the hospital or in cases of greater prehospital delay where the patient upon hospital arrival would be ineligible for thrombolytic therapy (Levine EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 284 et al.,1999; LaMonte et al., 2004; Taralson et al., 2014; Fassbender et al., 2017). For example, recent work by Ebinger et al. (2014) demonstrated that the use of mobile stroke units significantly reduced time to treatment compared to usual care. This, in turn, increased the rates of thrombolysis administration among eligible patients. There have been recent investigations into the newer and alternative ways to optimize pre-hospital stroke care, including through the use of mobile stroke units and pre-hospital telehealth consultations (Taralson et al., 2014). While this is a relatively new area of investigation with limited evidence (Fassbender et al., 2017), early indications show that there is potential that more widespread application of these newer techniques may assist in the delivery of better care (Levine et al.,1999; LaMonte et al., 2004; Taralson et al., 2014; Fassbender et al., 2017). Further, although there is potential for these techniques to be used in every context, the need and benefit may be even greater in smaller urban or rural areas with serious health human resource shortages and high-risk populations without specialized stroke services (Hanlon & Halseth, 2005; Leveine et al., 1999). As previously stated, there is a need for changes at the practice level when examining administrative data. While these are practice-level changes, there is a need for changes at the policy level to ensure support of these changes and greater compliance and follow-through for these practices. For example, the high proportion of strokes documented as being of an unknown type could have implications for care provision and quality improvement. Therefore, improving documentation of clinical information and expanding the collection of variables to include factors such as stroke severity and information on other social determinants of health like race, socioeconomic status, through policy measures would ensure that we continue to make improvements and move towards a more equitable model of EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 285 health service delivery (Bryant et al., 2011). While there is no shortage of patient data in hospitals, at most facilities it is not collected with the intent of use for research purposes. As a result, much of it remains under-used yet over-collected. In addition to improving the accuracy and completeness of data collection procedures, establishing systems for population health surveillance are essential to guiding health system improvements for increased efficiency, cost-effectiveness, responsiveness, and sustainability (Friedman et al., 2015). For example, in the context of the current study, it would have been beneficial to not only capture whether imaging was done within 24 hours, but rather ensure the more specific collection of the time of imaging in more specific hours or minutes after patient presentation. Doing so would help guide improvements in door-to-imaging times as well as door-to-needle times. For Phase A of this work, there were numerous challenges encountered in the data acquisition and analysis process. Preparation for the application began in the summer of 2016 and involved ongoing discussions with the university privacy office and Population Data BC as the application was prepared. First, the process to determine which data source could be used to answer the research question was a challenge. I was able to connect with advisors at Stroke Services BC to better understand which dataset could be used and they were kind enough to provide a case-finding definition, based on their previous work. Second, the application process was extensive and multi-step and while it was undertaken during my first semester of study, I was unable to formally submit until candidacy exams were complete and a formal ethics approval had been obtained. Third, there was considerable processing time involved in the Ministry of Health to review the data request. Additionally, it was not certain at this point that the request would even be approved. Fourth, the preparation and release of the dataset took several months. Fifth, there were notable challenges with data cleaning, EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 286 which have been outlined previously. And finally, there were several issues with problems in the files. For example, I needed to re-analyze the dataset three different times due to coding errors in the source files. Each of these setbacks added considerable strain to the process and added several months of delays to the timeline of this project. For Phase B, data were collected according to a standardized process at CIHI as part of a national stroke improvement initiative. While this ensured completeness and accuracy of the data, there were still challenges and limitations. It is important to note that there were a sizeable proportion of stroke cases documented as ‘unknown’. With imaging completion rates in the 90% range, there is a need to address this disconnect. In discussing the issue with senior data analysts and front-line providers, it was apparent that a large part of the ‘unknown’ stroke cases can be traced back to poor documentation. Second, for this current study, it was not possible to examine the time to neuroimaging as only 24-hour benchmarks were captured in the data. This is a vital gap due to the time-sensitive nature of stroke and the need for rapid assessment. Addressing this documentation challenge by making it a necessary field to fill could help strengthen the completeness of data and help guide future stroke care initiatives. Due to the challenges encountered in accessing and using data for this study, it can be said that there is a need for transformative change to enable researchers to be able to use the data that is collected. This is especially important given that it is this data that often forms the foundation of policy and resource allocation decisions. Barriers to accessing this data promptly, errors in the data files, and limitations in the types of data and variables collected, all make it possible that there continues to be a lack of resources and insufficient focus on the issues that stand to make the most impact. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 287 Better aligning data collection procedures to ensure that this data can be used to inform research and guide improvements to patient care and health system transformation can lead to a stronger, more sustainable, and more responsive health system, while also addressing the ethical issue of using the data we collect. In its current state, a patchwork system of data collection procedures and systems currently exists in hospitals across the country. There are, however, examples of success. For example, in 2015, a collaborative in Quebec was undertaken to track care of ischemic stroke patients to identify areas of system improvement. Data linkage was used to measures delays through the various transitions in care, including 911 call to hospital arrival, ED triage, time of neuroimaging, stroke severity, administration of thrombolysis, EVT access, readmissions, and mortality (Heart & Stroke Foundation of Canada, 2015). While the focus of this dissertation was on pre-hospital and emergency stroke care, participants also highlighted additional areas of need through their personal experiences of stroke. As such, for researchers, there is an ethical and moral obligation to report on these findings and make recommendations to fill these perceived gaps. Thus, I suggest a need to invest in dedicated stroke rehabilitation services to be made to all stroke patients, including physical, occupational, and speech and language therapy. Further, establishing mental health supports for those identifying a need for these services post-stroke is also warranted. While it is true that rural areas may not be able to sustain similar levels of specialized services due to factors such as staffing and population density, adopting a regionalized approach in combination with the use of telehealth could be a first step to increasing the level of supports for stroke in this area. For example, adopting a similar approach to the Network of Regional to Tertiary Healthcare (NORTH) clinic (Hennessy et al., 2016), which offers virtual cardiac EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 288 rehabilitation from Prince George for those in outlying northern areas, may provide a potential solution to addressing service delivery and accessibility challenges. In addition to increasing investment in stroke symptom awareness initiatives, the provision of acute stroke services, and post-stroke management resources, there is a need for change at the policy level to address risk factors and primary and secondary prevention. Preventative efforts must go beyond traditional educational approaches and require policy changes to address the social factors associated with increased risk. For example, addressing lower levels of physical activity in northern BC must go beyond advertising the recommended daily physical activity targets. Instead, there must be a concentrated effort to increasing access as well as accessibility to physical spaces, including parks, recreational facilities to encourage greater activity among the population (Frost et al., 2010; Martin et al., 2005; Pelletier et al., 2019; Pelletier et al., 2020). Finally, this work was in part supported by a Canadian Institutes of Health (CIHR) Trainee Award in Women’s Heart Health and a CIHR Doctoral Health System Impact Fellowship. As part of these awards, I had the opportunity to work more closely with individuals with lived experience, health system decision-makers within Northern Health, and take part in the provincial Hyperacute Stroke Collaborative led by Stroke Services BC. My time working on this fellowship provided some critical insights into the policy and practice components of stroke care delivery, particularly as it pertains to northern BC and how care in the northern part of the province sits within the provincial landscape. Some key insights and recommendations related to my experience in this role can be summarized as follows. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 289 In its current state, there is a patchwork system of care for stroke not only across the province but within Northern Health. Both on a provincial and regional level, there is a lack of coordinated policies and protocols for managing strokes. Different hospitals have different approaches to managing stroke, which in theory could in part be attributed to the consideration of different contexts and needs, however, in reality, it is more reflective of resource availability and priority setting on a larger scale. These variations can have important implications for patient outcomes. Specifically, within northern BC, there is a lack of coordinated supports to better manage stroke, which can be viewed in conflict with the Canada Health Act (1984) specifically to the principles of accessibility and universality. Stroke Services BC has been diligently working on improving stroke care on a provincial scale, however, the trickle-down impacts to regional health authorities are varied. Seeing as the Ministry of Health has identified improving stroke care as a provincial health system priority, it would not be unfair to say that dedicated, interdisciplinary, and sustained efforts across health service agencies, are essential to bringing the North up to speed with the rest of the province and provide greater coordination in areas where services are lacking. There are important regional deficits that warrant closer consideration and mitigation. Specifically, there is a need for investment to target identified gaps, including establishing a dedicated stroke care unit and regional stroke clinic. While evidence of the importance of dedicated stroke units has been present since the 1970s, Northern Health remains the only health region in BC without a level four facility (Appendix A). Given the regionalized approach that BC has taken to the management of health resources, it only makes sense for there to be an investment at UHNBC to establish a regional stroke unit to provide evidence- EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 290 based, timely stroke care. The evidence regarding the use of stroke units to coordinate stroke care is clear and shows improved post-stroke outcomes, including more timely and equitable treatment and lower rates of death and post-stroke disability (Canadian Stroke Best Practices, 2018; Caplan, 2016). Such a unit could provide substantial improvements in the delivery of stroke care, including coordinated and streamlined services, patient education, and support to outlying sites. Not only would this address a current gap, but it could also help alleviate costs to the healthcare system and result in savings for patients in the north for travel time, financial pressures, and stress for patients. Knowledge Translation As previously stated, this work was informed by an IKT approach (Graham et al., 2006). Continued engagement with patient partners, decision-makers, service delivery organizations, providers, and researchers ensured that the work remained relevant and impactful for real-world health system challenges for the delivery of stroke services in BC, particularly northern regions of the province. For example, having a committee member with real-world experience as a rural physician (Snadden) provided contextual insights that may otherwise have been overlooked. Furthermore, the engagement of a patient partner (Croome) on the research team helped ensure that interview questions best met the needs of potential participants and as a result yielded rich contextual insights. This way of working not only impacted the design and conduct of the study but provided an opportunity for me to develop skills in collaborative research which are invaluable moving forward in my career. Some knowledge translation outputs have already been generated as a result of this ongoing IKT approach, including some international and national conference presentations while others are planned, including some that have been postponed due to the COVID-19 pandemic. These can be found in Appendix L. The discussions generated throughout this EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 291 IKT process are also what informs the end-of-grant knowledge translation activities which are outlined below. End-of-grant Knowledge Translation Planning the end of grant knowledge translation activities for this work has been an ongoing process and multiple strategies will be adopted to share the findings of this research. I will continue to work with the wider team, including patient partner Croome, to design targeted knowledge translation outcomes and leverage the support of team members to help distribute these widely. First, a plain-language summary and infographic will be made available to facilitate the dissemination of findings among the patients and the general public. The goal of these knowledge translation deliverables will be to share the findings of this work and relay the information that is relevant to patients and the public in an accessible and easy-to-understand manner. Examples will include a one-page study summary for participants and key messages to support EHS use. These will be shared by harnessing the power of social media channels. Second, the outcomes of this study will be presented in a briefing and executive summary to key decision-makers, including those engaged in stroke care with the Provincial Health Services Authority, Stroke Services BC, Northern Health, and other relevant health networks, including BCEHS and the Heart and Stroke Foundation of Canada. Through harnessing the support of connections and team members, findings will be communicated widely and will be posted on relevant websites. Additionally, the study findings and recommendations will be shared in a webinar presentation to engage key knowledge users from Northern Health and other relevant health organizations. Finally, I will lead the authorship of three peer-reviewed research articles (a review article, findings from Phase A EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 292 and B, and findings from Phase C), for publication in high-quality clinical and/or health services journals. Potential avenues include the Journal of Stroke and Cerebrovascular Diseases and Prehospital Emergency Care. Other KT activities will include presentations to students to share my experiences as a trainee of engaging in patient-oriented research and IKT, and conference presentations including the KT Canada Summer Institute and the Fuse International Conference on Knowledge Exchange in Public Health. A summary of these activities is provided in Table 11. Table 11 Summary of Audience-specific Knowledge Translation Outputs Audience Patients, families, communities Knowledge translation outputs Infographic, community presentation, post on Patient Voices Network website Healthcare providers (nurses, physicians, allied health) Infographic, briefing summary, webinar Health system decision-makers Briefing note, summary report, presentation to Medical Services Advisory Committee (MSAC) at Northern Health, presentation to Stroke Services BC (SSBC), webinar Academic community Conference presentations, manuscripts, share findings with contacts at Heart and Stroke Foundation of Canada, note to Canadian Institutes of Health Research (CIHR) as part of research stories EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 293 Chapter Seven: Conclusion Much has been invested in public health initiatives, such as the Heart and Stroke Foundation of Canada’s Face F.A.S.T. program, focused on increasing stroke symptom awareness. Despite the substantial investment, early symptom recognition, and the subsequent user-initiation of EHS for transport are key barriers to patient receipt of timely, evidence-based stroke care (Heart & Stroke Foundation of Canada, 2017). More research is urgently needed to understand stroke awareness and the use of EHS in communities across Canada to reduce stroke burden and optimize patient outcomes. Specifically, understanding stroke awareness among vulnerable and high-risk populations, particularly in Canada’s smaller urban and rural communities, can provide crucial and meaningful insights to foster the development and refinement of healthcare services that are responsive and targeted to patient needs. These areas are often under-researched, underserviced, and experience a greater level of health outcome disparities. This exploratory multi-method study uncovered similarities and differences in stroke-related EHS across the province using two large-scale administrative hospital datasets. Using qualitative inquiry, some of the contextual factors possibly underlying these differences were also uncovered. Significance Statement This research responds to important health system priorities and has the following impacts: 1. It addresses key gaps in knowledge, especially concerning the transport practices of those experiencing a stroke in northern BC. As previously stated, this issue remains largely under-researched and poorly understood, particularly for individuals that live in smaller urban, rural, and remote regions. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 294 2. This work has the potential to impact healthcare provision, including informing the development and refinement of EHS stroke bypass protocols in BC and beyond. 3. This work identifies opportunities to improve stroke-related outcomes for patients. 4. The findings provide insights to inform the refinement of public health campaigns to raise awareness around stroke and the desired behavioral responses to stroke symptoms. This work helps address a knowledge gap related to the use of EHS services among stroke patients across BC. It more specifically provides insight into EHS use across the northern part of the province and greater clarity into the decision-making process of mobilizing EHS for acute stroke in rural, remote, and northern areas. As such, these findings are anticipated to be of significance and relevance on a national and possibly international level for similar small urban, rural, remote, and northern regions. Further, in preparation for changes to the BCEHS system, understanding these differences in EHS usage will assist in developing responsible healthcare practices and will help ensure that services are responsive to patient needs. A better understanding of EHS use for stroke has been identified as being an area of urgency, given the promise shown in experimental trials involving neuroprotectants such as NA-1 which was administered en route to the hospital in cases of suspected acute stroke (Buick et al., 2016). As such, outputs are timely and reflect a renewed focus on prehospital and EHS care. The rates concerning the impact of transportation mode on access to treatment and inhospital outcomes add to the little existing literature in this area and may help provide more definite information about trends related to prehospital delay and patient outcomes. This information may also potentially help inform ongoing work in stroke services on a provincial EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 295 level related to the development and refinement of hyper-acute stroke protocols. Finally, although this work was conducted using a provincial lens, the lessons learned are impactful at a national level. For example, similar regions in Canada as outlined in the ‘Peer Health Regions’ map by Statistics Canada (https://www150.statcan.gc.ca/n1/pub/82-402x/2017001/maps-cartes/rm-cr14-eng.htm). Findings will be of interest to patients, their caregivers, communities, and healthcare organizations, including stakeholders and decisionmakers. To our knowledge, this study is the first of its kind to be conducted on this particular topic. This work uses an exploratory approach to respond to an important and pressing public health concern and health service priority. Not only does it provide a provincial-level perspective on EHS use, but it attempts to better understand the issue of stroke health service organization as well the patient experience in northern BC. This is noteworthy as this is an area that has traditionally been overlooked for investigation due to the complexities that are inherent in the health service delivery landscape across this vast geographical region. It is a unique region comprising of rural, remote, and urban settings that pose unique health service challenges and don’t necessarily fit within the realm of evidence-based clinical guidelines, which often overlook the non-metropolitan perspective of providing healthcare. This study was informed by an IKT approach. As such, there has been a strong emphasis to involve individuals with lived experience of stroke and survivorship and their caregivers, decision-makers, healthcare providers, researchers, and various health service organizations, including the Northern Health Authority, BCEHS, the BC Emergency Medicine Network, the Provincial Health Services Authority, and Stroke Services BC. This has ensured that the study design and approach remains rooted in exploring a key health EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 296 service priority, reflects real-life practice realities, and is disseminated in an appropriate and targeted manner. Efforts to share early components of this work, specifically related to design and approach, have been made throughout the dissertation process, including presentations at academic conferences such as the World Stroke Congress, the Centre for Health Services and Policy Research (CHSPR), the Canadian Stroke Congress, and the BC SUPPORT Unit Provincial Conference. Concentrated efforts are also being made to leverage these connections to ensure the strong dissemination of findings. This will include developing patient-friendly summaries, infographics, general presentations (e.g., Northern Health Brown Bag Lunch series, UNBC Health Research Institute Seminar series) in addition to the more traditional scholarly outputs, including publications in peer-reviewed scientific journals and presentations at relevant academic conferences. Conclusion This research sheds light on an issue of critical importance in an area of complex health service delivery challenges. There may be a perception among those responsible for allocating services, especially in the context of a political environment, to dedicate supports and invest in services in areas where there is the greatest population density. This notion is often accompanied by resignation to the idea that the rural or remote lifestyle comes with inherent risks and factors such as reduced access to health services and should just be accepted as part of the decision to live in these regions. I would like to stress that while population densities may be lower outside larger metropolitan centres, the citizens residing in these smaller areas are just as deserving of high-quality healthcare as their more urbandwelling counterparts. Policy decisions must be rooted in robust scientific evidence with careful consideration of local needs and contexts. Perhaps in BC, an important first step would be ensuring that at minimum major regional centres, like UHNBC, have the resources EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 297 required to provide a higher level of care to outlying populations across the region. There is an urgent need for healthy and improved public policy as the interplay of pathological and political drivers can be attributed to disease development. Perhaps famed German pathologist, Rudolph Virchow, has said it best, “Medicine is a social science, and politics is nothing more than medicine on a larger scale”. 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EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 343 Appendix B ICD-10 Stroke Codes Code I60 I61 I62 I63 I64 I65 I66 I67 I68 I69 Diagnosis Nontraumatic subarachnoid hemorrhage Nontraumatic intracerebral hemorrhage Other and unspecified nontraumatic intracranial hemorrhage Cerebral infarction Occlusion and stenosis of precerebral arteries, not resulting in cerebral infarction Occlusion and stenosis of precerebral arteries, not resulting in cerebral infarction Occlusion and stenosis of cerebral arteries, not resulting in cerebral infarction Other cerebrovascular diseases Cerebrovascular disorders in diseases classified elsewhere Sequelae of cerebrovascular disease Source: International Classification of Diseases. (2010). Available at: https://icd.who.int/browse10/2010/en#/I60 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 344 Appendix C Sample of Discharge Abstracts Database Data Elements for Acute Inpatients Data Element Institution Number Description Five-character code assigned to a reporting facility by a provincial/territorial ministry of health identifying the facility and the level of care of the data submitted Batch Year The year the patient was discharged from a facility according to the fiscal year Chart Number The patient’s unique identification number assigned to associate the patient with a particular visit Register Number Facility derived and assigned number to associate the patient with a particular visit Calculated Length of The difference, in days, between the Admission Date and Stay Discharge Date Personal Health Number The patient’s healthcare insurance number assigned to the patient by the provincial/territorial/federal government Postal Code The six-digit alphanumeric code assigned to Canada Post to identify the patient’s place of residence Residence Code A jurisdiction-defined code that identifies the area in which the patient resides Sex Alpha character describing the sex of the patient Provincial/Territorial Represents the provincial/territorial government from which the Personal Health Number Healthcare Number was issued Responsibility of Identifies the primary source responsible for the payment of Payment service(s) rendered Birthdate Date patient was born Age Age is a derived variable that represents how old the patient is at the time of admission and is calculated using the Birthdate Admit Date/Time The date and time that the patient was officially registered as an inpatient Institution From Identifies another healthcare facility or another level of care within the reporting facility from which the patient was transferred for further care Admit Category The initial status of the patient at the time of admission the reporting facility Entry Code The point of entry to the facility Admit Via EHS Identifies whether a patient arrives at the healthcare facility via the EHS and the type of EHS that was used EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 345 Readmit Code Date/Time Left ED Wait Time in ED Discharge Date/Time Institution To Discharge Disposition Institution To Type Diagnosis Prefix Diagnosis Code Diagnosis Type Provides information about the patient’s previous acute care admission or day surgery visit at the reporting facility The date and time the patient physically left the emergency department and was moved to the inpatient unit, operating room or diagnostic area and did NOT return to the ED The difference, in hours, between the Admission Date/Time and the Date/Time Patient Left ED (home or ward transfer) The date and time when the patient was formally discharged Identifies the healthcare facility or another level of care within the reporting facility where the patient was transferred to for further care The location where the patient was discharged to or the status of the patient on discharge Type of care assigned to the institution entered to the Institution To field Provides additional information relating to the ICD-10 CA code to which it is assigned The ICD-10 CA classification code that describes the diagnoses, conditions, problems, or circumstances of the patient during the length of stay in the healthcare facility Code meant to signify the impact the condition had on the patient’s care as evidenced by the physician Source: Population Health Data BC: https://www.popdata.bc.ca/data/health/dad EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 346 Appendix D Data Fields in Canadian Institutes for Health Information Special Project 340 Data Element Description Stroke Onset Date and Time Patient-reported date and time of symptom onset Computed Tomography Scan/Magentic Resonance Imaging Scan with 24 Hours of Emergency Department Arrival Indicates whether Computed Tomography or Magentic Resonance Imaging was performed within in 24 hours of patient arrival Admission to an Acute or Integrated Stroke Unit Not applicable for the Northern Health as no stroke units in region Administration of Acute Thrombolytic Therapy Includes: alteplase (tPA), recombinant tissue plasminogen activator (rtPA) *Excludes: cathflo, reteplase, tenecteplase, urokinase, streptokinase (not commonly used) Prescription of Antithrombotics at Discharge Includes warfarin, dabigatran, rivaroxaban, dalteparin, enoxaparin, heparin, ASA, clopidogrel, dipyridamole, ASA, ticlopidine *Excludes: argatroban, bivalirudin, lepirudin, dipyridamole, abciximab, eptifibatide, tirofiban Referral to Stroke Prevention Services/Clinic at Discharge from the Emergency Department Not applicable for Northern Health as no stroke prevention clinic in the region Source: https://www.corhealthontario.ca/03-340-FAQS-May25F.pdf EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 347 Appendix E Interview Guide 1. Tell me about your experience of stroke. a. When did it occur? Where did it occur? b. What symptoms did you experience? c. Had you or anyone you know experienced a stroke or stroke-like symptoms before? 2. What factors did you consider when thinking of getting to the hospital? 3. Tell me about your experience in the hospital setting. What happened during your initial time in the hospital? a. How long was your hospital stay? 4. Is there anything else you would like to add? Or anything you think would be helpful for us to know? EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 348 Appendix F Recruitment Poster EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 349 Appendix G Information Letter and Consent Form Patient Information Letter and Consent Form May 2019 Study: Exploring the use of emergency medical services by stroke patients: what is known about when to seek emergency help and how transport decisions impact in-hospital care Principal Investigator: Daman Kandola University of Northern British Columbia Prince George, BC V2N 4Z9 kandola@unbc.ca and/or (250) 960-5259 Faculty Supervisor: Dr. Davina Banner University of Northern British Columbia Prince George, BC V2N 4Z9 Davina.Banner-Lukaris@unbc.ca or (250) 960-5259 Purpose of Project This study will help us learn more about what the medical journey is like for a patient who has had a stroke and the experiences of their caregivers residing in northern British Columbia. The study will look at healthcare services used and explore what people find helpful or unhelpful. Few studies have explored this area in the past. Who are we? We are a group of researchers interested in the experiences and management of stroke in rural and northern British Columbia. This work is part of a doctoral dissertation and is being supervised by Dr. Davina Banner, an Associate Professor in the School of Nursing at the University of Northern British Columbia. Ms. Daman Kandola is the lead researcher on this project and is a doctoral candidate in the School of Health Sciences at the University of Northern British Columbia. Why have you been invited to participate? I am being invited to be part of this study because; a) I have been identified as a person who has had a stroke in the last five years and lives in northern British Columbia; or b) I am the caregiver of a person who has had a stroke in the last five years and lives in northern British Columbia. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 350 Do you have to participate? Your participation is completely voluntary. If you agree to participate in this study, you are free to withdraw from the study at any time without providing an explanation. Regardless of whether or not you chose to participate, your present and/or future care will not be affected in any way. If you do choose to withdraw from the study, we will ask for your verbal permission to use the data collected up and until that point. You are not obligated to provide consent for the use of this information after discontinuing the study. What will happen during the project? If you agree to take part in this study, we will look to understand your medical journey from the time of your stroke until one year after. With your permission, we may access your medical record to document important information and timelines related to your stroke and treatment, such as the time to receiving a brain scan (CT/MRI) or stroke treatment such as clot-busting medications. Secondly, we will meet with you to ask about your experiences and talk about your medical journey. The information we collect will help us understand the experiences of stroke patients more clearly. This interview will be undertaken in person, or over the telephone at a time convenient to yourself. It will last around 30-45 minutes in duration and will be digitally recorded and transcribed. During the interview, you will be asked to tell us about your experience of having a stroke and about how you have accessed healthcare services in the time since your stroke. You are able to ask a caregiver or spouse to be present during the interview if you should wish. You may feel more comfortable having another person with you and they may be able to help us understand the immediate period following your stroke more clearly. What will you have to do? If you chose to participate, or would like further information, we will contact you and explain the study and answer any questions you may have. If you want to contact us to address any questions about the study, please contact Ms. Daman Kandola at 250-960-5259 or by email at kandola@unbc.ca. If you wish to participate, you will be asked if you agree to participate either in writing or over the phone. If you caregiver or spouse is present, they will be asked to provide consent either in writing or over the phone. What are the potential benefits of taking part? The study will not affect the care you are given but it will help us to develop new ways to provide healthcare services across northern British Columbia. Your participation is important in helping health professionals understand the experiences of people who have had a stroke. Some people may also find it helpful to talk about their experiences, thoughts, and feelings in confidentiality. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 351 What are the potential disadvantages? You will be asked to discuss your experiences; some people may occasionally find this difficult and possibly upsetting. However, the meeting will be informal and you do not have to discuss anything you may find difficult to talk about. You will be able to stop the interview or withdraw from the study at any time without explanation being sought. If there is any information that may indicate a serious problem or illness, we will let you and your doctor (with your consent) know. A list of local counselling resources and supports is attached at the end of this document for your convenience should you wish to access them. Will your taking part in the study be kept confidential? Every effort will be made to ensure that the information remains private and confidential , including the use of encryption and password protection. The researcher may need to examine your medical records to collect some information. Only information relevant to the study will be looked at, however, confidentiality cannot be completely guaranteed. Your name will not appear on any documentation. Instead, your information will be given a unique code to protect your identity. What happens after the research stops? Some of the information will be used to produce articles in research journals in order to share the findings with other health professionals. Your identity will remain anonymous in all written materials. All study-related data will be stored in a locked office, in a locked filing cabinet and/or password-protected and encrypted server at the University of Northern British Columbia’s School of Health Sciences. Only the study researchers will have access to this data. All study data will be securely stored for a period of five years to maximize knowledge translation of the findings. All data, with the exception of medical records, will be destroyed after this five-year period. Who is funding this research? The research is supported by a Research Project Award from the University of Northern British Columbia and a Northern Health and Canadian Institutes of Health Research (CIHR) Health System Impact Fellowship. There will be no financial rewards offered if you chose to participate. Your participation is completely voluntary. Study Results If I wish to obtain a copy of the research results, please inform a member of the research team (contact information listed on the first page) or can provide your contact information below. Questions or Concerns about the project If you have any further questions about this study, please contact: Ms. Daman Kandola Phone: 250-960-5259 Email: kandola@unbc.ca EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 352 This study has been reviewed by the Research Ethics Boards at Northern Health and the University of Northern British Columbia (UNBC). For concerns, questions regarding participant rights and ethical conduct of research, please contact the Office of Research by email at reb@unbc.ca or telephone at (250) 960-6735. EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 353 ------------------------------------------------------------------------------------------------------------------------Study Results Please indicate below if you would like to receive a copy of the results upon completion of this study. I wish to receive a copy of the results upon completion of this study. I wish to receive a copy of my interview transcript. Contact Details: Mailing address: ___________________________________________________ Phone number:_____________________________________________________ Email: ____________________________________________________________ Phone number (caregiver):____________________________________________ Email (caregiver):____________________________________________________ EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 354 Counselling Resources There are no foreseeable impacts on your healthcare or treatment as a result of your participation in this study. However, you may experience a level of discomfort uneasiness, or emotional upset because of some of the questions that arise during your interview. If you feel the need for counseling or support services, you may wish to contact the following resources: The following resources are available to all residents of Northern BC regardless of the place of residence. Crisis Center for Northern BC (Confidential and 24 hours) Telephone: 250.563.1214 Toll-free: 1.888.562.1214 Nursing Help Line 1.866.215.4700 Canadian Mental Health Association, BC Division Toll-free: 1.866.639.0522 To view information for resources in specific to your community, please visit: http://northernhealth.ca/YourHealth/MentalHealthAddictions/CommunityProgramsContacts.aspx Or http://bc-counsellors.force.com/CounsellorSearch EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 355 Participant Consent Form Study: Exploring the use of emergency medical services by stroke patients: what is known about when to seek emergency help and how transport decisions impact in-hospital care Daman Kandola University of Northern British Columbia, Prince George, BC V2N Principal Investigator: 4Z9 kandola@unbc.ca and/or (250) 960-5259 Dr. Davina Banner University of Northern British Columbia, Prince George, BC V2N Faculty Supervisor: 4Z9 Davina.Banner-Lukaris@unbc.ca or (250) 960-5259 I have read or been described the information presented in the information letter about the project: YES NO I have had the opportunity to ask questions about my involvement in this project and to receive additional details I requested. YES NO I understand that if I agree to participate in this project, I may withdraw from the project at any time up until the report completion, with no consequences of any kind. I have been given a copy of this form. YES NO I agree to be recorded (if applicable). YES NO Follow-up information (e.g., transcription) can be sent to me at the following e-mail or mailing address (if applicable). I understand confidentiality cannot be completely guaranteed: YES NO EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 356 Signature (or note of verbal consent): Name of Patient Participant (Printed): Date: EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 357 Caregiver Consent Form Study: Exploring the use of emergency medical services by stroke patients: what is known about when to seek emergency help and how transport decisions impact in-hospital care Daman Kandola University of Northern British Columbia, Prince George, BC V2N Principal Investigator: 4Z9 kandola@unbc.ca and/or (250) 960-5259 Dr. Davina Banner University of Northern British Columbia, Prince George, BC V2N Faculty Supervisor: 4Z9 Davina.Banner-Lukaris@unbc.ca or (250) 960-5259 I have read or been described the information presented in the information letter about the project: YES NO I have had the opportunity to ask questions about my involvement in this project and to receive additional details I requested. YES NO I understand that if I agree to participate in this project, I may withdraw from the project at any time up until the report completion, with no consequences of any kind. I have been given a copy of this form. YES NO I agree to be recorded (if applicable). YES NO Follow-up information (e.g., transcription) can be sent to me at the following e-mail or mailing address (if applicable). I understand confidentiality cannot be completely guaranteed: YES NO Signature (or note of verbal consent): Name of Caregiver Participant (Printed): Date: EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 358 Appendix H Certificate of Tri-Council Policy Statement 2.0 Completion EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 359 Appendix I University of Northern British Columbia Research Ethics Certificate EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 360 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 361 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 362 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 363 Appendix J Northern Health Research Ethics Letter EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 364 Appendix K Concept Mapping for Qualitative Interviews in Phase C EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 365 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 366 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 367 Appendix L Sample Knowledge Translation Outputs EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 368 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 369 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 370 EMERGENCY HEALTH SERVICES USE FOR STROKE IN BRITISH COLUMBIA 371