EXPERIENCES OF ADULT CANCER SURVIVORS RECEIVING CANCER SURVIVORSHIP CARE FROM PRIMARY CARE PROVIDERS: AN INTEGRATIVE REVIEW by Ineke Rhebergen B.S.N., University of Victoria, 2013 PROJECT SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING: FAMILY NURSE PRACTITIONER UNIVERSITY OF NORTHERN BRITISH COLUMBIA April 2025 © Ineke Rhebergen, 2025 ii ABSTRACT Cancer is a disease of increasing global prevalence, resulting in a rising need for cancer survivorship care (CSC; World Health Organization [WHO], 2024). While definitions of CSC vary, primary care providers (PCPs) are increasingly required to care for cancer survivors (Nekhlyudov et al., 2017). The purpose of this integrative review is to appraise existing literature to gain an understanding of the experiences of cancer survivors who receive CSC from a PCP. This review was guided by the research question: for adult cancer survivors, what is the experience of cancer survivorship care provided by a PCP? A systematic literature search was conducted, followed by an appraisal of the selected eight studies. The findings reveal the complexity and potential scope of CSC, revealing inconsistency and wide variability in patient experiences of receiving CSC from a PCP. While some study participants reported positive experiences of accessing CSC and the overall quality of their CSC from a PCP, others expressed dissatisfaction in these areas. Some consistency in cancer survivor experience was found in the areas of PCP knowledge levels and organization of CSC, with the overall perception being one of inadequacy. Given the numerous benefits of improving the care of cancer survivors, and the need to increase the role of PCPs in CSC provision, researchers, policymakers, and educators need to take note of these patient experiences to make positive improvements to CSC. iii TABLE OF CONTENTS Abstract ii Table of Contents iii List of Abbreviations v List of Tables vi List of Figures vii Introduction 1 Chapter One Background Definitions Importance of CSC CSC: What Is It? CSC: Whose Role Should It Be? Purpose of Integrative Review 2 2 3 4 5 7 Chapter Two Methods Research Question Formulation Search Strategy: Search Terms Search Strategy: Databases Screening: Deduplication, Title and Abstract Screening Screening: Inclusion and Exclusion Criteria Critical Appraisal Search Results Summary 8 8 9 9 12 12 14 14 Chapter Three Findings Study Features Study Participant Details Identified Themes Access to CSC Organization of CSC PCP Knowledge of CSC Significance and Quality of CSC 16 16 16 20 20 22 25 26 Chapter Four Discussion Access to CSC Organization of CSC PCP Knowledge of CSC Overall Quality of CSC 32 32 37 39 40 iv Future Considerations Limitations Chapter Five Conclusion References Appendix A 43 43 45 46 Literature Review Matrix 54 v LIST OF ABBREVIATIONS CIHI Canadian Institute for Health Information CSC Cancer survivorship care CRC Colorectal cancer IOM Institute of Medicine NCI National Cancer Institute PCP Primary care provider UK United Kingdom USA United States of America WHO World Health Organization vi LIST OF TABLES Table 1: Search Strategy and Preliminary Results 11 Table 2: Inclusion and Exclusion Criteria 13 Table 3: Study Participant Ages 18 Table 4: Study Participant Demographics 19 Table 5: Participant Endorsement Levels for Specific Aspects of PCP-led CSC 29 vii LIST OF FIGURES Figure 1: PRISMA Flow Diagram 15 1 Introduction Cancer is a disease that exists worldwide, and the number of individuals living with or beyond cancer is continually increasing (WHO, 2024). As these numbers continue to grow, the onus is increasingly placed on PCPs to care for cancer survivors (Nekhlyudov et al., 2017). Cancer survivors not only deserve to have their needs and experiences acknowledged, but they also merit improvements in the current delivery of care. Understanding patient experiences is essential for offering patient-centred care, which has been linked to greater satisfaction among patients and providers, enhanced perceptions of care quality, and improved health outcomes for patients (McMillan et al., 2013; Santana et al., 2017). Moreover, patient-centred care can reduce the use of health services and healthcare costs (Santana et al., 2017). In light of the current global shortages of healthcare practitioners and the resulting strain on healthcare systems, health policymakers, medical educators, PCPs, and government bodies can benefit from listening to the experiences of cancer survivors and implementing changes in existing systems (Lawson, 2023; Santana et al., 2017). This integrative review assessed existing literature to understand the experiences of cancer survivors receiving survivorship care from a PCP. This review was guided by the research question: “For adult cancer survivors, what is the experience of cancer survivorship care provided by a PCP?" 2 Chapter One: Background Cancer is a widespread global health concern, affecting approximately one in five individuals over their lifetime (WHO, 2024). In 2022, an estimated 20 million new cancer cases were reported worldwide, with this number projected to rise by 77%, exceeding 35 million affected individuals, by 2050 (WHO, 2024). This increasing cancer burden reflects population growth, aging, and exposure to risk factors such as tobacco and alcohol use, obesity, and air pollution (WHO, 2024). Additionally, improvements in early detection of cancers and advancements in the treatment and care of cancer patients mean that individuals are living longer after a cancer diagnosis (Miller et al., 2016; WHO, 2024). As the prevalence of cancer continues to rise, the population of those living with or beyond cancer is expanding significantly, resulting in a growing demand for comprehensive CSC. Definitions The definitions of "cancer survivor" and "cancer survivorship" vary considerably across the literature. Some definitions characterize survivorship as beginning after the completion of initial treatment, regardless of whether the individual remains cancer-free, while others define it as commencing only when a person is deemed cancer-free (Jefford et al., 2013). A more recent and widely accepted definition, provided by the National Cancer Institute (NCI, 2024), regards an individual as a cancer survivor from the time of diagnosis for the rest of their life. Furthermore, cancer survivorship is described as “a state of being that encompasses the perspectives, needs, health, and the physical, psychological, social, and economic challenges faced by individuals and caregivers following a cancer diagnosis” (NCI, 2024, para. 2). For this integrative review, the definition of CSC will align with that used by the NCI and encompass care for individuals from the time of diagnosis throughout the remainder of their lives. 3 The definition of a PCP varies, with no universally agreed-upon standard. PCPs are commonly recognized as general practitioners, family physicians, nurse practitioners, and physician assistants (Canadian Institute for Health Information [CIHI], n.d.). However, the term may also encompass other healthcare professionals such as nurses, dietitians, physiotherapists, and social workers when they provide primary care services (CIHI, n.d.). Given that the definition of primary care is that which “supports first-contact, accessible, continuous, comprehensive, and coordinated person-focused care” (WHO, n.d., para. 1), it is understandable why the title of PCP lacks a universally accepted definition. Including all licensed providers but focusing on specific practitioners, the NCI (n.d.) defines a PCP as “a doctor or other licensed medical professional, such as a nurse practitioner or physician assistant, who manages a person’s health care over time” (para. 1). For the purposes of this integrative review, the term PCP will specifically refer to general practitioners, family physicians, nurse practitioners, and physician assistants. Importance of CSC Cancer survivors face a heightened risk of developing various physical and psychosocial conditions, either as a result of their cancer and its treatment, or independently of it (Nyarko et al., 2015). Approximately 70% of cancer survivors experience comorbid conditions (Hudson et al., 2012), which may include pain, fatigue, cognitive impairment, sexual dysfunction, depression, anxiety, fear of recurrence, immune suppression, cardiovascular disease, secondary cancers, and a general decline in quality of life (Nyarko et al., 2015; Sulik, 2013). Given the complex and long-term nature of these challenges, CSC must be comprehensive and lifelong, incorporating screening, assessment, and management of a wide range of cancer-related sequelae (Nekhlyudov et al., 2019). 4 CSC: What Is It? CSC can be defined in many ways, and each healthcare system varies in its view of the CSC components. The NCI (2024) is the United States of America’s (USA) federal cancer research agency that is widely referenced internationally, and it describes CSC as comprehensive care for people with a history of cancer, beginning at the time of diagnosis and carrying on throughout the cancer survivor’s life. CSC aims to assess and mitigate the impact of cancer and any of the treatments that often coincide with the disease (NCI, 2024). The necessary components of CSC can be outlined as follows (NCI, 2024): - surveillance and amelioration of physical, emotional, and psychological effects, including evaluation of risk, prevention, and management of late effects - surveillance for recurrence and new cancers - assessment and promotion of health behaviours (e.g., smoking cessation, physical activity) - coordination of care between care team members, health systems, survivors, and caregivers - addressing comorbidities and preventing and managing chronic conditions exacerbated by cancer and its treatment - engagement in care planning, including discussing goals of care and advanced care planning - provision of supportive health services (e.g., nutrition, occupational and physical therapy, rehabilitation, sexual health, fertility services, dental and podiatry services) - genetic risk assessment or referral to genetic testing as appropriate - management of social risks, health-related social needs, education and employment 5 - addressing financial hardship and insurance coverage It is important to note that treatment of the disease itself does not seem to be considered part of CSC, despite the usual intention that CSC begin at the time of diagnosis. This detail was not found to be explicitly stated, despite searching multiple cancer care and cancer research platforms. However, the language seems to depict cancer treatment as treatment of the disease process, which is separate from CSC; instead, CSC manages all other aspects of a cancer survivor’s health during and after treatment, including the effects of the cancer treatments (NCI, 2024). Due to the varying definitions of cancer survivor and CSC combined with the continually evolving understanding of CSC, the literature remains somewhat unclear on when CSC begins. CSC: Whose Role Should It Be? The Institute of Medicine (IOM, 2005) published a seminal report in 2005 titled From Cancer Patient to Cancer Survivor: Lost in Transition. This report was written in response to the alarming statistics regarding the large and rapidly growing number of individuals living with cancer, as well as the recognition that this population was understudied and often lost to followup by researchers and health services after the completion of active cancer treatments (IOM, 2005). The aim of this report from the IOM was to raise awareness of the multifaceted consequences of cancer and its treatment, define quality healthcare for cancer survivors, identify strategies to achieve quality healthcare for this demographic and enhance the quality of life of cancer survivors through the development of policies (IOM, 2005). Following this report, there was a notable global increase in CSC research and efforts to enhance it. The research conducted in the aftermath of the 2005 IOM report supported its findings and underscored the importance and necessity of increasing PCP involvement in CSC, as well as transferring more responsibility for CSC to PCPs (Jefford et al., 2020; Nekhlyudov et al., 2017). 6 Historically, CSC has been provided by surgeons, oncologists, PCPs, or a combination of these providers (Nekhlyudov et al., 2017). However, studies have demonstrated that PCP-led CSC improves healthcare costs while delivering similar quality outcomes to a more traditional specialist CSC model (Grunfeld et al., 2006; Vos et al., 2021). Beyond the financial benefits of increasing PCP involvement in CSC, some additional reasons that highlight the need for increasing PCP involvement in CSC include (Nekhlyudov et al., 2017): - increasing demands for acute care by oncology providers due to increasing rates of new cancer diagnoses - greater numbers of long-term cancer survivors in need of follow-up care and/or management of late and long-term effects of cancer and cancer treatments - multi-morbidities among newly diagnosed cancer patients and long-term survivors - emphasis on the importance of health behaviours and lifestyle modifications to optimize health PCPs, therefore, have the potential to alleviate some of the financial strain on the healthcare system and to relieve some of the burdens that oncology providers bear. This could allow oncologists to see individuals with new cancer diagnoses and those needing active treatment while ensuring that individuals transitioning out of active treatment are not neglected. Furthermore, PCPs have experience with managing chronic diseases and individuals with multimorbid diseases, setting them up as excellent candidates for caring for the growing population of cancer survivors (IOM, 2005; Nekhlyudov et al., 2017). Finally, as providers who often see patients on a repeat basis and have the opportunity to build positive rapport with patients, PCPs are also well-positioned to provide education and care regarding health 7 behaviours and lifestyle modifications that can optimize health, further addressing the complex needs of individuals living with or after cancer. Purpose of Integrative Review Despite global efforts to implement comprehensive and quality CSC, substantial gaps persist, underscoring the necessity for more effective strategies (Nekhlyudov et al., 2019). Addressing these gaps requires a deeper understanding of cancer survivors’ experiences. Only after gaining an understanding of these experiences can current shortcomings be identified and strategies for improvement sought. As PCPs increasingly assume responsibility for CSC, insight into the experiences of adult cancer survivors receiving this CSC is important to guide future CSC. Therefore, this integrative review aims to explore the existing literature on adult cancer survivors’ experiences with receiving CSC from a PCP. 8 Chapter Two: Methods The process for this integrative review was guided by the step-by-step approach to conducting an integrative review (Toronto & Remington, 2020). Toronto & Remington (2020) describe six main steps of an integrative review: 1. Formulate the research question and purpose. 2. Complete a systematic literature search. 3. Critically appraise the research. 4. Complete a literature analysis and synthesis. 5. Discuss the new knowledge. 6. Disseminate the findings. This Methods chapter outlines the research process undertaken in the first three steps of the integrative review process. This includes details of the research question formulation; the search strategy, including the search terms and database searches; the screening process, which discusses deduplication, title and abstract screening, and inclusion and exclusion criteria; the critical appraisal process, including the appraisal tools that were used; and the results of the searches. Steps four through six will be discussed in detail in the Findings and Discussion chapters. Research Question Formulation A literature search was conducted to identify relevant publications to answer the research question: For adult cancer survivors, what is the experience of CSC provided by PCPs? This research question was formulated using the Population (P), Intervention (I), and Outcome (O) framework to guide the systematic search required for this integrative review (Melnyk & Fineout-Overholt, 2023). Within this framework, the population consists of adult cancer 9 survivors, the intervention refers to CSC provided by PCPs, and the outcome is the experiences of the adult cancer survivors receiving this CSC. Search Strategy: Search Terms It was necessary to pay careful attention to the selection of search terms to be used, as several keywords within this research question had multiple possible variations, for example, PCP includes other titles such as nurse practitioners, general practitioners, family physicians or family doctors. This can be seen in further detail in Table 1 below, or as noted in the definitions section of the Background chapter. Overlooking any of these variations could have resulted in the exclusion of potentially relevant studies. These search terms were identified in consultation with an academic research librarian at the University of Northern British Columbia in October 2024 to ensure a comprehensive and systematic search. Table 1 provides the specific search terms for each database. Search Strategy: Databases Following a consultation with an academic research librarian at the University of Northern British Columbia in October 2024, three electronic databases were selected and systematically searched: the Cumulative Index to Nursing and Allied Health Literature (CINAHL) Complete, the American Psychological Association (APA) PsycINFO, and the Medical Literature Analysis and Retrieval System Online (MEDLINE (EBSCO)). These databases were chosen for their comprehensive coverage of disciplines relevant to the research question. Specifically, CINAHL encompasses medicine, nursing, and allied health; APA PsycINFO includes psychology and behavioural sciences; and MEDLINE covers medicine, nursing, and the broader healthcare system (University of Northern British Columbia, 2024). Following the completion of the database searches, Google Scholar was searched to further 10 ensure the comprehensiveness of the search by potentially identifying grey literature and articles not embedded in the databases that were searched for this integrative review. The preliminary searches of CINAHL, Medline EBSCO, and PsycINFO yielded a total of 84 results. There were 51 articles identified from CINAHL, 26 from Medline EBSCO, and six from PsycINFO. Three additional articles were identified through a Google Scholar search. No pertinent grey literature was identified for inclusion. Hand searches were done by searching through web pages of well-known institutes that discuss cancer-related care, for example, the NCI, WHO, Canadian Cancer Society, and European Cancer Organisation. Ancestry searches were done by looking through reference lists of relevant articles (some of which were included in this review, others that were not included but were relevant to CSC). The hand searches and ancestry searches did not uncover any further relevant studies to be included in this integrative review. Table 1 provides the specific retrieval numbers for each database. 11 Table 1 Search Strategy and Preliminary Results Database Search Date Search terms CINAHL APA PsycINFO MEDLINE EBSCO Oct 26, 2024 Oct 26, 2024 Oct 26, 2024 (Cancer N3 survivor*) AND (“patient experience*” or “patient perception*” or “patient opinion*” or “patient attitude*” or “patient view*” or “patient feeling*” or “survivor experience*” or “survivor perception*” or “survivor opinion*” or “survivor attitude*” or “survivor view*” or “survivor feeling*”) AND (“survivor* care” or “survivor* treatment” or “survivor* aftercare” or “survivor* after care” or follow-up or “follow up” or aftercare or “after care” or “post treatment”) AND ("primary care provider*" or pcp or gp or "general practi" or "family doctor*" or "nurse practi*" or np or "family nurse practi*" or "family physician" or "primary care" or "primary healthcare" or "primary health care") (Cancer N3 survivor*) AND (“patient experience*” or “patient perception*” or “patient opinion*” or “patient attitude*” or “patient view*” or “patient feeling*” or “survivor experience*” or “survivor perception*” or “survivor opinion*” or “survivor attitude*” or “survivor view*” or “survivor feeling*”) AND (“survivor* care” or “survivor* treatment” or “survivor* aftercare” or “survivor* after care” or follow-up or “follow up” or aftercare or “after care” or “post treatment”) AND ("primary care provider*" or pcp or gp or "general practi" or "family doctor*" or "nurse practi*" or np or "family nurse practi*" or "family physician" or "primary care" or "primary healthcare" or "primary health care") (Cancer N3 survivor*) AND (“patient experience*” or “patient perception*” or “patient opinion*” or “patient attitude*” or “patient view*” or “patient feeling*” or “survivor experience*” or “survivor perception*” or “survivor opinion*” or “survivor attitude*” or “survivor view*” or “survivor feeling*”) AND (“survivor* care” or “survivor* treatment” or “survivor* aftercare” or “survivor* after care” or follow-up or “follow up” or aftercare or “after care” or “post treatment”) AND ("primary care provider*" or pcp or gp or "general practi" or "family doctor*" or "nurse practi*" or np or "family nurse practi*" or "family physician" or "primary care" or "primary healthcare" or "primary health care") Age 18 and older Age 18 and older 26 7 Database Age 18 and older filter Number of results for 51 screening 12 Screening: Deduplication, Title and Abstract Screening Following the preliminary search, 87 articles were identified and moved forward to the screening process. Duplicate studies were identified and removed using Covidence software, followed by manual verification to ensure accuracy. After deduplication, 68 studies remained and underwent title and abstract screening to ensure relevancy to the research question, resulting in the exclusion of 49 studies. The full texts of the remaining 19 studies were assessed for eligibility based on inclusion and exclusion criteria. Screening: Inclusion and Exclusion Criteria Inclusion and exclusion criteria were applied to ensure that this review aligned well with the research question and to reduce the risk of bias (Melillo, 2020). This review focused on the experiences of receiving CSC from a PCP. Therefore, it was essential to limit included studies to those conducted in primary care settings, where CSC had been provided by a PCP rather than a specialist (e.g., a surgeon or oncologist). To adequately address the research question, which focuses on adult CSC, studies were only considered for inclusion in this integrative review if the participants were aged 18 years or older and had received a diagnosis of cancer. Studies were also only included if they were peer-reviewed to ensure validity and quality (Kelly et al., 2014). Finally, articles needed to be published in English to save time and resources, as this integrative review was completed by only one person whose ability to read and understand languages is limited to English. During the full-text screening process, it became clear that several studies identified from the database searches concentrated on participants' perceptions of or preferences about PCP-led CSC before receiving care from a PCP. These perceptions primarily came from patients who had received their care from a specialist and were predicting pros and cons regarding PCP-led CSC 13 or from cancer survivors who were currently undergoing active cancer treatments and were asked about their preferences for care following the completion of their treatments. As this review aimed to investigate actual experiences with CSC rather than anticipated perspectives, those studies were excluded. Due to the limited number of relevant articles that focused on this topic, no geographical or date restrictions were applied during screening. After the full-text screening was completed for the 19 studies and inclusion and exclusion criteria were applied, 11 studies were eliminated from inclusion in this integrative review for the following reasons: - two studies were eliminated for being about the perceptions of PCP-led CSC prior to receiving PCP-led CSC - five studies were eliminated for the CSC being provided outside of a primary care setting - two studies were eliminated because they were not about cancer survivor experiences - two studies were eliminated because the CSC was not provided by a PCP The complete inclusion and exclusion criteria are detailed in Table 2. Table 2 Inclusion and Exclusion Criteria Inclusion Criteria Peer-reviewed articles English language CSC provided in a primary care setting CSC provided by a PCP Adult population (age 18 years and over) Diagnosis of cancer received Exclusion Criteria Perceptions about PCP-led CSC prior to receiving PCP-led CSC 14 Critical Appraisal The author of this integrative review appraised the qualitative and cross-sectional studies using the corresponding Critical Appraisal Skills Programme tools (Critical Appraisal Skills Programme, 2024a; Critical Appraisal Skills Programme, 2024b) and the mixed-methods studies using the Mixed Methods Appraisal Tool (Hong et al., 2019). A detailed critical appraisal matrix is included in Appendix A. Search Results Summary The full search and screening processes are depicted in Figure 1 using a Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram. The preliminary searches of CINAHL, Medline EBSCO, and PsycINFO yielded a total of 84 results, with three additional articles identified through a Google Scholar search. After deduplication, 68 studies remained and underwent title and abstract screening. This resulted in the further exclusion of 49 studies. The remaining 19 studies underwent full-text screening, after which a total of eight studies met all the criteria and were included in this integrative review. 15 Figure 1 The PRISMA Diagram Depicting Search Strategy and Results Note. Diagram adapted from Covidence systematic review software. 16 Chapter Three: Findings The searches of the database and grey literature conducted for this integrative review yielded a total of eight studies examining the experiences of adult cancer survivors receiving CSC from PCPs. Study Features Among the eight studies included in this integrative review, four are qualitative studies (Appleton et al., 2019; Garpenhag et al., 2024; Khan et al., 2011; Rutherford et al., 2023), two are mixed-methods studies (Kim et al., 2024; Vos et al., 2023), and two are cross-sectional studies (Mao et al., 2009; Nyarko et al., 2015). One study involved participants from 18 different countries, with 82% being from the USA, 2% from Canada, and 16% from 16 other countries not individually identified in the study (Nyarko et al., 2015). The remaining seven studies were conducted in individual countries, including two in the United Kingdom (UK) (Appleton et al., 2019; Khan et al., 2011), one in the Netherlands (Vos et al., 2023), one in Sweden (Garpenhag et al., 2024), two in Australia (Kim et al., 2024; Rutherford et al., 2023), and one in the USA (Mao et al., 2009). Study Participant Details The ages of participants included in each of the eight studies in this integrative review varied, ranging from 18 years to greater than 81 years. The age ranges included in each study are detailed below in Table 3. Three of the studies included participants diagnosed with various types of cancer; one of these studies included participants who had a diagnosis of either breast, prostate, lung, colorectal, or malignant melanoma cancer (Garpenhag et al., 2024), another included participants diagnosed with either breast, colorectal, or prostate cancer (Khan et al., 2011), and a third included 17 participants diagnosed with one of any of over 30 different types of cancer (Nyarko et al., 2015). Three studies exclusively included participants with colorectal cancer (Kim et al., 2024; Rutherford et al., 2023; Vos et al., 2023), one study focused solely on participants with a breast cancer diagnosis (Mao, 2009), and another study only included participants with a prostate cancer diagnosis (however, 3 participants did concurrently have another cancer diagnosis) (Appleton et al., 2019). All eight studies included in this integrative review included varying levels of detail regarding patient sociodemographics. Table 4 below outlines each study’s participant data on cancer types, treatment status (active treatment, completed treatment, or no treatment at any point), the presence of comorbid diseases, sex, and ethnicity as these were the most commonly recurring recorded data. Further details can be found in the Literature Review Matrix in Appendix A. 18 Table 3 Study Participant Ages Study Participant Ages in Years # of Participants Appleton et al. (2019) 61-64 65-70 71-75 76-80 2 3 3 2 Garpenhag et al. (2024) 48-78 20 Khan et al. (2011) 18- 60 61-70 71-80 81 and above 8 10 16 6 Kim et al. (2024) 30-39 40-49 50-59 60-69 ≥ 70 9 12 17 7 6 Mao et al. (2009) ≤ 65 > 65 204 96 Nyarko et a. (2015) 18-39 40-64 ≥ 65 69 203 53 Rutherford et al. (2023) 20-29 30-39 40-49 50-59 60-69 ≥ 70 2 4 2 7 3 1 Vos et al. (2023) 67 Mean age, # not specified 19 Table 4 Study Participant Demographics Study and Total # of P Appleton et al. (2019)10P Cancer Types Treatment (tx) Status Comorbid Diseases Sex Ethnicity Prostate (3 participants with other concurrent cancer diagnosis) Active tx= 2P Past tx= 8P Hypertension= 2P Stroke= 1P Arthritis= 1P High cholesterol= 1P Bowel problems= 2P M (all) White British= 8P White European= 1P Black Caribbean= 1P Garpenhag et al. (2024)20P Breast Prostate Lung Colorectal Melanoma (malignant) Included tx that was active, past, or never done (further details not provided) Data not provided 11 M 9F Data not provided Khan et al. (2011)- 40P Breast Colorectal Prostate Minimum 5 years since diagnosis, tx status not specified Data not provided 18 M 22 F Data not provided Kim et al. (2024)- 51P Colorectal Past tx= (all) Active tx= not specified, but 6P had disease recurrence 15P with comorbid diseases (further details not provided) 11 M 40 F Data not provided Mao et al. (2009)- 300P Breast Stage I-III Active tx= 0P Past tx= all P (note, all participants were taking aromatase inhibitor medication post-tx) Data not provided F (all) Non-Hispanic White= 253P Non-Hispanic Black= 38P Hispanic= 3P Asian= 3P Mixed race= 3P Nyarko et a. (2015)- 351P 30 different types (main types= breast, lung, colon, ovarian, prostate) Active or past tx (further details not provided) Data not provided 58 M 293 F White= 277P Non-White= 70P Rutherford et al. (2023)19P Colorectal Stage I-III Past tx Data not provided 6M 13 F Data not provided Vos et al. (2023)- 141P Colorectal Stage I-III Completed tx a minimum of 3 months prior 98 Males 43 Females Data not provided 0-1= 63P ≥ 2= 78P (further details not provided) Note. Tx= Treatment, P= Participants, M= Male sex, F= Female sex 20 Identified Themes The findings concerning cancer survivors’ experiences receiving CSC from a PCP have been organized into the following themes: (1) access to CSC; (2) organization of CSC; (3) PCP knowledge of CSC; and (4) significance and quality of CSC. Access to CSC Patient experiences regarding access to PCP care varied across studies and even within the studies themselves. In Rutherford et al. (2023), those participants who generally felt that their care needs were being met also described positive experiences in accessing their PCP, stating that their PCP was even “accessible by email” or “squeezed me in for appointments” (p. 466). Within that same study, those who felt their care needs were unmet indicated that they had difficulty obtaining appointments with their PCP within a reasonable amount of time, and they often felt rushed during appointments with their PCP (Rutherford et al., 2023). The researchers did not expand upon these findings and did not identify any other potential contributors to patients reporting that their CSC needs were being either met or unmet by their PCP. Participants in the Garpenhag et al. (2024) study reported both positive and negative experiences with accessing PCP-based CSC. Participants described that it took “self-reliance and activity to make [primary health care] work” (p. 3), and while many participants perceived the need for them to shoulder this responsibility for themselves as negative, the way in which this was characterized depended primarily on an individual’s expectation of who would have or should have, held this responsibility (Garpenhag et al., 2024). Those participants who expected to have the responsibility of organizing and accessing their own CSC reported largely positive experiences with their ability to access PCP-led CSC. However, the majority of participants reported an experience of struggling to acquire adequate CSC from their PCP; participants 21 expressed that they felt they had to be “stubborn” to obtain access to their PCP, or that their PCP was unavailable to provide the care that was needed (Garpenhag et al., 2024). The participants in the study by Garpenhag et al. (2024) expressed the importance of having sufficient language skills and the ability to express themselves to access the CSC they felt was needed. The researchers did not include any further elaborations on what participants deemed as adequate CSC, what made participants feel stubborn, or precisely what care they felt was needed but not provided. Such feelings of struggling to access care were often exacerbated by a participant’s state of overall health, with poor health status making it more challenging for participants to have the energy to be “stubborn,” as mentioned above (Garpenhag et al., 2024). Participants in the Khan et al. (2011) study described positive experiences in accessing their PCP when they spoke about it in general terms; however, once they were asked about needing to access their PCP to receive CSC, they identified frustrations regarding accessing care with good continuity. Participants reported that receiving good quality PCP-led CSC was challenging when the PCP providing that CSC was inconsistent; the requirement to see different PCPs over time if a patient wanted to access CSC could be the result of a number of potential factors, such as high staff turnover, full provider schedules, or simply a clinic structure in which the PCPs were not assigned to particular patients (Khan et al., 2011). These types of situations resulted in participants feeling less important, as though their PCP was too busy to address their cancer-related issues. Participants also reported that the ability to have difficult, but needed, conversations about cancer was hindered when they did not have adequate opportunity to develop a strong, therapeutic relationship with a single provider (Khan et al., 2011). Participants in the Appleton et al. (2019) study had access to a consistent PCP for their CSC; as a result, they developed a therapeutic relationship with their PCP, and experienced continuity of care, which 22 led them to report a positive experience with CSC provided in the primary care setting. However, the convenience sampling recruitment strategy used in this study may have been biased toward participants who were particularly positive toward their PCP (Appleton et al., 2019). Overall, the experiences of accessing CSC from PCPs varied greatly, with both positive and negative experiences reported depending on both system and personal variables. Organization of CSC Poor organization and coordination of CSC provided by PCPs contributed to negative patient experiences across all eight studies included in this integrative review. Throughout the cancer survivorship journey, patients often experience multiple transitions, such as changes in care providers, healthcare facilities, or types of care, including primary care and specialist care. These transitions require good communication and the coordination of key elements, such as data transfer, timing, and resource identification and allocation. After completing cancer treatment and transitioning to primary care, patients often reported feeling a sense of displacement (Appleton et al., 2019). In the study by Mao et al. (2009), only 28% of participants perceived effective communication between their PCP and oncology teams, and 56% rated the overall cohesiveness of their care as inadequate. No further details were provided regarding what the study participants considered adequate communication or care cohesiveness or why the scores were given by participants. The findings of Mao et al. (2009) relied solely on a cross-sectional design that employed Likert scales for measurement, thereby limiting participants’ ability to elaborate or clarify their responses. Although Nyarko et al. (2011) reported slightly higher rates of perceived communication, these rates remained low, with only 40% of participants indicating satisfactory communication. There was no detail provided on what participants in this study considered satisfactory communication. 23 Patients frequently reported insufficient provision of essential information during the transition to primary care after cancer treatment was completed. One participant in the study by Appleton et al. (2019) mentioned that there was a slowness in communication when transitioning from specialty care to primary care, while multiple participants in the study from Garpenhag et al. (2024) reported feeling compelled to take on the role of a healthcare liaison due to deficient communication between specialty and primary care, personally managing and transferring medical information between practitioners due to the use separate electronic medical records. This responsibility proved particularly challenging for those facing more significant health challenges or for individuals lacking a personal support system to assist them (Garpenhag et al., 2024; Rutherford et al., 2023). One participant in Rutherford et al. (2023) stated that “the problem with overseeing your own care is that when you are quite ill, the other people need to make the effort…you can’t advocate and reach out yourself.” Another participant noted that coordinating their own care when they felt unwell would have been very challenging without the support of their family (Rutherford et al., 2023). While most participants found the need to coordinate their own care burdensome, some stated that they valued taking on the role of healthcare liaison because it provided a sense of involvement and control over their healthcare decisions (Rutherford et al., 2023). Study participants from Rutherford et al. (2023) further described feeling that there was a lack of a plan provided when transitioning into primary care after cancer treatment. Other key areas of concern regarding insufficient information provision during the transition into primary care included a lack of guidance on post-treatment expectations, self-management strategies for treatment-related sequelae, appropriate contacts for assistance, warning signs requiring medical attention, and the availability of supportive services (Rutherford et al., 2023). 24 After transitioning to primary care for CSC, Rutherford et al. (2023) and Vos et al. (2023) discovered that participants often felt that they lacked a designated point of contact, creating confusion about follow-up schedules and where they would receive their CSC. Vos et al. (2023) did not clarify what would be considered a designated point of contact. However, multiple participants in the study by Rutherford et al. (2023) felt that nurses could be an excellent single point of contact for patients, helping them navigate the transition from active treatment to primary care by answering questions, directing them to the appropriate resources, or even attending appointments with them if they needed extra support. Patients also encountered difficulty remembering and tracking necessary follow-up tests and assessments (Vos et al., 2023). The participants in Vos et al. (2023) received a follow-up schedule, which they found valuable despite being confusing. The researchers did not elaborate on why the participants felt the schedule was confusing. Notably, the PCPs in the study by Vos et al. (2023) were providing follow-up cancer care for the first time. The researchers noted this and suggested that the PCP’s communication skills and ability to coordinate care may improve over time with further experience providing CSC (Vos et al., 2023). The other seven studies included in this integrative review did not discuss using follow-up schedules, so it is unclear if they were used in these studies. The overarching theme noted across the eight studies was the inadequacy of communication and care coordination during the transition to and throughout primary care. While some participants were less affected by these challenges, most viewed them as a significant and negative aspect of their care experience. 25 PCP Knowledge of CSC Across all eight studies included in this integrative review, most cancer survivors perceived their PCPs as lacking adequate knowledge of cancer care. Specifically, each study indicated that participants believed PCPs did not possess a comprehensive understanding of the disease, its diagnosis, and the available treatment options (Appleton et al., 2019; Garpenhag et al., 2024; Khan et al., 2011; Kim et al., 2024; Mao et al., 2009; Nyarko et al., 2015; Rutherford et al., 2023; Vos et al., 2023). Participants also noted specific deficiencies, including the requirements for follow-up care (Nyarko et al., 2015), referral processes (Rutherford et al., 2023), lab test interpretations (Vos et al., 2023), and the short- and long-term effects of cancer treatments (Khan et al., 2011; Vos et al., 2023; Rutherford et al., 2023). While the findings from Kim et al. (2024) were specific to colorectal cancer and may not apply to all cancer types due to differing illness symptoms, treatments, and sequelae between cancer types, only 31% of participants in the study felt their PCP had a solid understanding of treatment-related sequelae. Due to this perceived lack of knowledge among PCPs, some participants felt compelled to seek information about their disease from alternative sources, such as the internet or social media, despite believing that this information should be provided by their PCP (Rutherford et al., 2023). Notably, one study acknowledged that while participants felt PCPs lacked sufficient cancer knowledge, they also recognized it was unrealistic to expect PCPs, as generalists, to possess comprehensive expertise in cancer care (Rutherford et al., 2023). The study emphasized the need for systemic healthcare improvements to better support general practitioners in enhancing their knowledge of cancer care (Rutherford et al., 2023). Neither the study participants nor the researchers made recommendations for changes in the healthcare system; however, the researchers acknowledged specific system-level issues that could be addressed. These issues 26 include inadequate financial support for allied health sessions for cancer survivors and patient out-of-pocket expenses for support not covered by the healthcare system, both of which can increase the workload for PCPs trying to fill this care gap in areas where others may have more expertise (Rutherford et al., 2023). Another identified issue was unfunded non-clinical work by practitioners, potentially limiting the incentive for further training or education in CSC (Rutherford et al., 2023). PCP knowledge emerged as a consistent theme across all eight studies, yielding complementary findings. While Rutherford et al. (2023) emphasized that the healthcare system inadequately supported PCPs in acquiring sufficient cancer care knowledge, all studies agreed that participants viewed PCPs as lacking adequate knowledge in this domain. Significance and Quality of CSC Perceptions of Overall CSC Participants had considerable variability in their overall experiences with PCPs providing CSC across the eight studies included in this integrative review. Most participants in Rutherford et al. (2023) viewed their PCP as essential to post-treatment care, noting that the PCP is in a position where they can influence all aspects of the care experience post-treatment. In contrast, Khan et al. (2011) found that most participants in their study did not see their PCP as playing a significant role in their long-term cancer care. Similarly, Nyarko et al. (2015) reported generally unfavourable perceptions of CSC provided by PCPs, whereas Vos et al. (2019) found that participants were satisfied with the care they received. The primary factors influencing perceptions of overall PCP care included ethnicity, trust in the PCP, time spent with the PCP, and pre-existing relationships with the PCP (Appleton et al., 2019; Mao et al., 2009; Nyarko et al., 2015; Rutherford et al., 2023). Participants from non-white 27 racial backgrounds reported more positive perceptions of PCP-led CSC; however, this finding was only measured in the two cross-sectional studies included in this integrative review and not across all the studies (Mao et al., 2009; Nyarko et al., 2015). The studies by Appleton et al. (2015), Mao et al. (2009), and Nyarko et al. (2009) reported that spending more time with a PCP was associated with higher levels of trust, which in turn contributed to more favourable perceptions of overall care. Rutherford et al. (2023) found that participants who had a pre-existing relationship with their PCP had more positive perceptions of the care they received, partly due to increased comfort in discussing their health concerns. However, while most participants who had a pre-existing relationship with their PCP expressed increased comfort levels, some participants with a pre-existing relationship with their PCP expressed that this decreased their comfort levels when discussing sensitive issues like fertility, mental health, or intimacy (Rutherford et al., 2023). The quantitative portions of the mixed methods and cross-sectional studies varied significantly, rating overall PCP-led CSC as 65 out of 100 (Mao et al., 2009), 59.8 out of 100 (Nyarko et al., 2015), and 9.6 out of 10 (Vos et al., 2023). In Kim et al. (2024), half of the participants were satisfied with the help they received from their PCP while the other half were dissatisfied. Perceptions of Specific Areas of CSC Beyond the perceptions of overall PCP-led CSC quality, some specific areas of PCP-led CSC were discussed in the eight studies in this integrative review. The study participant endorsement levels for specific aspects of care, as reported in the quantitative sections of the mixed-methods studies (Mao et al., 2009; Nyarko et al., 2015), are summarized in Table 5 below. These care areas include general care, health promotion, cancer symptom diagnosis and 28 management, follow-up care, surveillance for late effects of therapy, holistic care delivery, and psychological care. Neither of these mixed-methods studies provided any further explanation of these categories. Verifying the accuracy and generalizability of these reported findings is challenging due to variations in the specific elements assessed across studies, differences in data collection methods, and diverse sample populations, as noted in Tables 3 and 4 above and the literature review matrix in Appendix 1. These inconsistencies limit the ability to make direct comparisons across studies. For example, both Nyarko et al. (2015) and Mao et al. (2009) had predominantly white sample populations. The sample population in Mao et al. (2009) was further restricted to early-stage breast cancer survivors drawn from a single tertiary care centre, whereas Nyarko et al. (2015) included participants who were survivors of more than 30 different types of cancer. These variations complicate the comparison of the data and the application of the findings to other populations. The exclusive use of Likert scales, as seen in Mao et al. (2009), or internetbased surveys, as seen in Nyarko et al. (2015) for data collection introduces potential selection bias and diminishes the study’s clinical significance by limiting participants' ability to elaborate or clarify their responses. The qualitative studies included in this review revealed additional perceptions about specific aspects of PCP-led CSC. These included the need for more comprehensive information during long-term CSC, particularly regarding available resources, disease specifics, available treatment options, and holistic care plans, including follow-up strategies (Khan et al., 2011; Kim et al., 2024). Furthermore, participants expressed a desire for more timely notifications of test results (Khan et al., 2011). Some of the participants in the studies from Garpenhag et al. (2024) and Rutherford et al. (2023) also felt that clinical guidelines were not being adequately followed, 29 therefore forcing cancer survivors to create their own allied healthcare teams or “fix and mend things on [their] own,” although specific examples of this were not provided. Table 5 Participant Endorsement Levels for Specific Aspects of PCP-led CSC Element of care endorsed Participant endorsement General care 61.1% (Nyarko et al., 2015) Health promotion care 73% (Mao et al., 2009) Cancer symptom diagnosis and management 41% (Mao et al., 2009) Follow-up care 50% (Mao et al., 2009) Surveillance for late effects of therapy 59% (Mao et al., 2009) Holistic care delivery 66.8% (Nyarko et al., 2015) 78% (Mao et al., 2009) Psychological care 64.2% (Nyarko et al., 2015) 73% (Mao et al., 2009) Psychological Care. A specific recurring theme across the studies was the psychological care component of CSC. In addition to the quantitative findings in the table above, the qualitative data revealed mixed experiences. In Rutherford et al. (2023), perceptions of psychological care largely depended on the patient-PCP relationship; those with favourable views of their PCP appreciated the emotional support provided, whereas others felt uncomfortable scheduling an appointment to discuss their emotional needs, though the specifics regarding their discomfort were not detailed. Similarly, Vos et al. (2023) found that while participants did not initially perceive an important role for their PCP in psychological care, they also expressed an 30 expectation that their PCP would "look further than only their wound and physical recovery" (p. 118), revealing a degree of contradiction in their perspectives. Participants in the Khan et al. (2011) study also expressed a desire for increased psychological support from their PCP during CSC. These participants specifically expressed a desire for ongoing psychological counselling, with one example provided by a breast cancer survivor who felt that her practitioner should have done more to assess and address her ongoing depression (Khan et al., 2011). The study done by Appleton et al. (2019) compared the experiences of PCP-led and specialist-led CSC. They found that while study participants struggled to discuss sensitive issues in both settings, PCPs were viewed as more approachable, less intimidating, and more effective in reducing anxiety, which promoted discussions of psychological concerns (Appleton et al. 2019). One participant attributed this to the primary care environment having a more personal touch, meaning that it was smaller, and, therefore, felt less busy and less rushed (Appleton et al., 2019). When it came to discussing sensitive psychological issues such as sexual and emotional well-being, feelings of isolation, cognitive challenges, and financial stressors, Kim et al. (2024) reported that 80% of their study participants reported difficulties in this area. Some participants in the study by Rutherford et al. (2023) also expressed discomfort with discussing sensitive issues, while others felt comfortable raising these concerns. Those who expressed a sense of discomfort attributed it to things like feeling there was insufficient time to discuss both cancer and general well-being, feeling awkward discussing negative emotions in general, or preferring to talk to somebody like a counsellor or healthcare provider that they did not previously know (Rutherford et al., 2023). As noted earlier, while some participants expressed decreased levels of comfort discussing sensitive issues with a PCP that they had a pre-existing healthcare 31 relationship with, a pre-existing patient-PCP relationship typically increased comfort levels with discussing sensitive issues (Rutherford et al., 2023). Overall, experiences related to the quality and significance of CSC provided by PCPs varied considerably, both in terms of overall care and specific aspects of care. 32 Chapter Four: Discussion This integrative review examined adult patient experiences of receiving CSC from a PCP. Across the eight studies included in this review, participants' experiences varied significantly. While many participants reported positive experiences with receiving CSC from a PCP, particularly regarding their access to care and the overall quality of care provided, others expressed dissatisfaction in these areas. Notably, all eight studies underscored consistent concerns about the organization of care being provided and PCP knowledge levels regarding specific aspects of CSC. Understanding the experiences of cancer survivors who have received CSC from PCPs is essential for ensuring patient-centred care in this context. Patient-centred care is linked to enhanced patient satisfaction with treatments, improved quality of life, and the fulfillment of needs; perceived quality of care; and better health outcomes, such as higher rates of treatment adherence and reports of diminished subjective symptoms like pain and anxiety (McMillan et al., 2013; Rathert et al., 2012; Santana et al., 2017). The research does not clarify whether patientcentred care significantly impacts long-term objective health measures such as body mass index or blood pressure (Rathert et al., 2012; Santana et al., 2017). As the population of cancer survivors continues to grow and PCPs take on an increasingly vital role in delivering CSC, it is crucial to consider effective strategies for optimizing CSC in this context (Jefford et al., 2020; Rubin et al., 2015). This discussion will address each of the themes from the Findings chapter. Access to CSC Patient experiences of accessing CSC from a PCP were notably inconsistent, both across and within studies, which highlights the need to understand the underlying factors that may contribute to this variability. 33 Needs and Perceptions The diverse experiences of study participants who received PCP-led CSC highlight the subjective nature of what will be regarded as suitable CSC access compared to poor CSC access. There is no universally accepted standard for what constitutes “good” or sufficient or timely access to care, and perceptions of the services received will vary among individuals. As previously noted, cancer survivors have complex and multifaceted needs that may be influenced by factors such as pre-existing health conditions, cancer type and stage, required or chosen treatments, absence of treatment, treatment-related sequelae, and the extent of personal support systems (Garpenhag et al., 2024; Rutherford et al., 2020). These factors may interact in unique ways to contribute to an individual’s perception of care accessibility. For instance, an individual who has undergone less invasive cancer treatment modalities before starting CSC may experience fewer treatment-related complications and require less frequent medical interventions from their PCP as part of CSC; consequently, that person may perceive their access to CSC provided by their PCP more positively due to a limited need for such interactions. However, an individual who has multiple pre-existing comorbidities, has undergone multiple invasive treatments as part of their cancer care, and is experiencing significant treatment sequelae may still report a positive experience with access to care if they have a strong personal support system and/or have an established therapeutic relationship with their PCP. Barriers Beyond the variations in individual perspectives that contribute to inconsistencies in reported experiences of accessing PCP-led CSC, the perception of accessibility is also often influenced by the presence or absence of structural and systemic barriers. While specific barriers may differ across countries and even within different regions of the same country, research 34 shows that certain challenges are consistently faced on a global scale (Corscadden et al., 2018). Unfortunately, no research was found regarding global barriers to accessing the CSC aspect of primary care, so the barriers discussed in this section concern accessing generalized primary care. Although barriers to accessing the CSC aspect of primary care provision likely differ from those related to general primary care access, the generalized primary care data offers insight into where the problems may lie until further research is conducted in this area. Lower income status, mental health conditions, chronic illnesses, and being born outside the country where an individual is seeking care consistently present significant obstacles to accessing primary care internationally (Alemu et al., 2024; Corscadden et al., 2018). One of the reasons that low-income status may be a barrier to accessing primary care is a possible provider lack of understanding of living in poverty, leading to the development of care plans that do not account for an individual’s social circumstances (Corscadden et al., 2018). Being born outside the country where primary care is sought may cause barriers due to language and cultural differences between patients and PCPs (Corscadden et al., 2018). Those living with mental health conditions may experience barriers to accessing primary care secondary to the stigmatization of mental illness and/or the lack of preparedness of PCPs to deal with mental health issues (Corscadden et al., 2018). In addition to universal access barriers, each country faces their own unique barriers to accessing primary care. In a 2024 report comparing the performance of health systems in 10 countries (Australia, Canada, France, Germany, Netherlands, New Zealand, Sweden, Switzerland, UK, and USA), access to care was one the elements that was assessed (Blumenthal et al., 2024). This report by Blumenthal et al. (2024) is not specifically about access to primary care but rather general access to healthcare. However, it is still applicable as primary care is a large component of 35 healthcare and speaks to the healthcare systems of the included countries. In this comparison report written by Blumenthal et al. (2024), the Netherlands has the best access to care and ranks highest (first), followed by the UK (second), Germany (third), Sweden (fourth), New Zealand (fifth), France (sixth), Canada (seventh), Switzerland (eight), Australia (ninth), and the USA (10th). A key factor influencing access to primary care is the distinction between publicly funded and privately financed healthcare systems (Blumenthal et al. 2024; Heba et al., 2023). This distinction may help explain these rankings, as the Netherlands, the UK, Germany, and Sweden all operate publicly funded healthcare systems, whereas Australia has a publicly funded system but with an option of paying for health insurance that allows for faster access to care for some (and as a result slower access for those who cannot afford the health insurance) (Blumenthal et al., 2024). The USA relies primarily on private healthcare financing, which makes access unaffordable for many individuals (Blumenthal et al., 2024). To further improve access to primary care, countries like the Netherlands and Germany have also made it mandatory for primary care physicians to provide a certain number of work hours each year for primary healthcare services available after regular business hours and on the weekends (Blumenthal et al., 2024). Unfortunately, despite healthcare systems that may theoretically allow for improved access to care through avenues like ensuring that care is affordable via publicly funded systems, many countries still experience limited access due to shortages of healthcare practitioners, resulting in unfilled positions and long wait lists for patients, and this is especially evident in primary healthcare (Boniol et al., 2022; Russo et al., 2023). This shortage of primary healthcare providers is a global issue that threatens equity in healthcare and is present in both private and publicly funded systems (Blumenthal et al., 2024; Boniol et al., 2022). 36 Study Specifics A few key points stand out when examining how the factors discussed above correlate with the eight studies included in this integrative review. Firstly, the study by Nyarko et al. (2015) involved participants from multiple countries, thereby potentially enhancing its general applicability to various regions by including internationally gathered data from diverse political and healthcare systems and the barriers that exist in these differing landscapes (Nyarko et al., 2015). Additionally, the study by Nyarko et al. (2015) encompassed various types of cancer diagnoses, further enhancing its general applicability to populations with different cancer types. However, it is important to note that Nyarko et al. (2015) may have faced selection bias due to its internet-based survey, which could exclude populations with limited internet access, such as older adults or those from lower socioeconomic backgrounds, potentially decreasing its level of general applicability. The other seven studies were confined to participants from individual countries or specific regions within those countries, rendering them less globally generalizable due to the differences in participant demographics and healthcare system structures. Six of these studies were conducted in countries with publicly funded healthcare systems: two studies were from the UK (Appleton et al., 2019; Khan et al., 2011), two from Australia (Kim et al., 2024; Rutherford et al., 2023), one from Sweden (Garpenhag et al., 2024), and one from the Netherlands (Vos et al., 2023). The study by Mao et al. (2009) was conducted within the private pay system in the USA. The stages and types of cancer diagnoses represented across these studies (as noted in Appendix 1) also varied, which could have impacted participant experiences. 37 The factors discussed regarding access to care can influence needs, perceptions, and barriers to accessing PCP-led CSC, potentially explaining some of the variations in the reported experiences of accessing this care. Organization of CSC The experiences regarding the organization and coordination of PCP-led CSC were reported by study participants as predominantly negative across all eight studies included in this integrative review. The primary underlying issue seems to be inadequate communication, both among healthcare providers and between cancer survivors and their PCP. Participants described feelings of displacement (Appleton et al., 2019), a lack of cohesive care (Mao et al., 2009), confusion regarding follow-up needs (Rutherford et al., 2023; Vos et al., 2023), and the need to act as their own healthcare liaison (Rutherford et al., 2023; Vos et al., 2023). Notably, some participants in the study by Rutherford et al. (2023) expressed appreciation for this self-advocacy role, as it provided them with a sense of control over their health; however, no specific data was available on these individuals in terms of their health status, support systems, health literacy levels, or other things that may influence their appreciation for taking on this role. Further research is required among those reporting more negative experiences with the self-advocacy or liaison role to investigate the factors influencing these differing perspectives, such as the invasiveness of their treatments, the strength of their personal support systems, health literacy levels, or racial or socioeconomic status variations. Similarly, future research could also focus on these same aspects among those reporting positive experiences with taking on the healthcare liaison role to better understand the factors affecting this experience. 38 Communication between healthcare providers and between PCPs and cancer survivors was a consistent concern for participants in all eight of the studies included in this integrative review. A potential strategy for improving this communication and enhancing care coordination is implementing a structured follow-up schedule or care plan that outlines the cancer survivor’s diagnosis, treatment plan, follow-up requirements, and ongoing care management. Theoretically, this approach could improve communication among healthcare providers and between healthcare providers and cancer survivors by passing along individualized information for these key elements, keeping patients informed about their current and future care needs, and reducing the risk of patients becoming lost during transitions in care. This strategy shows the potential for improving cancer survivors’ experiences, as demonstrated in the study by Vos et al. (2023); participants were provided with a follow-up schedule, which was generally appreciated despite some reported confusion. As mentioned in the Findings chapter, the PCPs in this study by Vos et al. (2023) were brand new to providing follow-up cancer care, suggesting that the noted confusion may improve with time and experience, furthering the appreciation and benefit of the provided follow-up schedules. It is worth noting that the seminal 2005 report by the IOM, as discussed in the Background chapter, recommended CSC care plans to facilitate transitions from active treatment to post-treatment care. However, subsequent studies have found that CSC care plans did not significantly improve health outcomes or patient-reported experiences as anticipated (Boekhout et al., 2015; Grunfeld et al., 2011). Further research would be beneficial to understand why the care plans did not improve outcomes or experiences or if changes to the care plans could produce different results. 39 PCP Knowledge of CSC Participants in all eight studies included in this integrative review felt that their PCPs exhibited inadequate knowledge of the cancer disease process, encompassing diagnosis, treatment, potential complications, and follow-up requirements (Appleton et al., 2019; Garpenhag et al., 2024; Khan et al., 2011; Kim et al., 2024; Mao et al., 2009; Nyarko et al., 2015; Rutherford et al., 2023; Vos et al., 2023). This perceived knowledge gap regarding CSC among PCPs was consistent across the studies, indicating that this concern exists across various countries, cancer types, healthcare systems, medical education programs, and patient demographics. Despite the perceived lack of CSC knowledge among PCPs, the study by Vos et al. (2023) found that participants were still satisfied with the care they received. However, it is important to note that, as the researchers indicated, there was potential for selection bias in the Vos et al. (2023) study, which may have favoured the inclusion and, consequently, possible overrepresentation of patients who were already positive about their PCP. This suggests that the findings of the Vos et al. (2023) study may not be broadly applicable to all cancer survivors receiving CSC from a PCP. The perceived lack of PCP cancer knowledge may reflect the inherent generalist nature of the PCP position, as acknowledged by some participants in the study by Rutherford et al. (2023), who expressed that it is unreasonable to expect PCPs to possess in-depth expertise in cancer care because of this. Nevertheless, every study included in this integrative review reported this lack of specialized knowledge as a significant barrier to a positive CSC experience. Therefore, to address this barrier to a positive PCP-led CSC experience, further research is needed on how to enhance CSC knowledge among PCPs. 40 One proposed solution to decrease the CSC knowledge gap among PCPs is the integration of oncogeneralists (PCPs who receive additional training in oncology), who could provide direct clinical care and serve as educational resources for their peers (Nekhlyudov et al., 2017). However, given the increasing population of cancer survivors and the global shortage of PCPs, this is unlikely to be a definitive or timely solution. Therefore, it is crucial that all PCPs acquire fundamental competencies in CSC, as oncogeneralists alone cannot fill this gap (Nekhlyudov et al., 2017). The questions remain, then, regarding what fundamental competencies in CSC are and how this education can be provided to PCPs to ensure these competencies are achieved on a large scale. As a result, further research should examine the essential knowledge and skills required for PCPs to care for this patient population effectively. Furthermore, several questions merit additional examination in future research: Should healthcare systems offer greater institutional support for PCPs to access specialized oncology education? Should medical school curricula include more extensive CSC training? Could CSC care plans serve as a means to bridge existing knowledge gaps by providing the necessary information for PCPs? Addressing these questions could help inform strategies for enhancing PCPs’ understanding of CSC and improve survivorship experiences. Overall Quality of CSC Similar to experiences with access to care, study participants' perceptions of overall care quality varied considerably across the eight studies included in this integrative review. As highlighted in the Background chapter, cancer survivors have complex and multifaceted needs that differ significantly among individuals, likely influencing their evaluations of the quality of care received (Rutherford et al., 2020). This variability in experiences may also be linked to 41 differences in healthcare systems across the countries represented in the studies included in this integrative review, as well as changes in healthcare policies, clinical practices, and provider availability over the 16-year period of the included studies. Moreover, differences in sample populations across the studies may have impacted the reported care quality. These differences might encompass factors such as ethnicity, race, financial stability, the presence of personal support systems, or residence in urban versus rural areas. Some of the eight studies included in this integrative review also identified notable features that may have influenced the perceptions presented in the research. For instance, Vos et al. (2023) noted that their study could be biased towards participants with a positive view of their PCP. The study by Garpenhag et al. (2024) recruited participants through advocacy groups, often attracting individuals who are more engaged in their health and generally healthier. Additionally, Nyarko et al. (2015) and Kim et al. (2024) utilized electronic surveys and recruitment methods, potentially excluding the viewpoints of those with limited internet or computer access, such as elderly individuals or those from lower socioeconomic backgrounds (Nyarko et al., 2015; Kim et al., 2024). Two studies included in this integrative review found that non-white participants rated the overall quality of their PCP-led CSC more favourably than white participants (Mao et al., 2009; Nyarko et al., 2015). Mao et al. (2009) also noted that individuals with lower levels of education and increased medical comorbidities had more positive perceptions of their PCP-led CSC. They suggested that this difference may be attributed to non-white cancer survivors relying more on PCPs rather than specialists due to potentially improved access, communication, and culturally responsive care that is facilitated by the continuity of care often associated with care provided by a PCP (Mao et al., 2009). This finding highlights the potential significance of the generalist role 42 of PCPs in CSC, as their long-term relationships with patients may enable a more holistic approach to care that addresses diverse patient needs (Reeve et al., 2011). However, it is important to acknowledge that the sample populations in both Mao et al. (2009) and Nyarko et al. (2015) were predominantly white, meaning the small number of non-white participants may not accurately reflect the experiences of non-white cancer survivors on a larger scale. There was wide variability in the sociodemographics among the participants in the eight studies included in this integrative review. This wide variability, combined with only some of the included studies factoring in things like ethnicity, the presence of other household members for support or medical comorbidities while other studies did not, makes it challenging to identify potentially significant patterns in the data. Overall perceptions of PCP-led CSC were also influenced by trust in the PCP, time spent with the PCP, and pre-existing relationships with the PCP (Appleton et al., 2019; Mao et al., 2009; Khan et al., 2011; Nyarko et al., 2015; Rutherford et al., 2023). It seems that spending more time with a PCP, which typically occurs through a pre-existing relationship, positively affects trust levels in the PCP. This, in turn, enhances cancer survivors’ overall perception of the quality of care from the PCP (Appleton et al., 2019; Mao et al., 2009; Nyarko et al., 2009). This further highlights the benefit of having a PCP who can provide long-lasting continuity of care. Unfortunately, due to the global shortage of PCPs that has worsened with the recent pandemic, individuals find it challenging to establish and maintain this continuity of care with a PCP (Lawson, 2023; Russo et al., 2023). Addressing this shortage of PCPs is beyond the scope of this integrative review, but it is essential for researchers and policymakers to acknowledge the impact it has on CSC experiences, as PCPs continue to deliver increasing amounts of CSC. 43 Future Considerations The critical role of PCPs in CSC is well-established in the literature and discussed throughout this integrative review (Jefford et al., 2020; Vos et al., 2021). However, evidence from this integrative review suggests that adult cancer survivors receiving CSC from PCPs often report dissatisfaction with their care. The significant variety in findings discussed throughout this integrative review emphasizes the complex nature of CSC and the challenges in delivering universally effective CSC. In addition to the recommendations for future research outlined in this Discussion chapter, this integrative review underscores that a single model of care is unlikely to be suitable for all healthcare systems, types of cancer diagnoses, or patient demographics (Nekhlyudov et al., 2017). While some insights from this integrative review and the included research can be applied broadly, future research should focus on developing and evaluating models of care that can be tailored to different contexts to address the diverse needs of the cancer survivor population. Limitations This integrative review has several limitations. First, despite the thorough use of search terms, some relevant studies may have been overlooked during the database and grey literature searches. Additionally, excluding non-English language articles may have restricted the data and insights in this integrative review by omitting information that could enhance the understanding of the global experiences of cancer survivors and help identify recurring themes on a global level. Furthermore, since this review was conducted by a single researcher, there is an increased risk of personal bias influencing the analysis and interpretation of findings. This concern is particularly relevant given the researcher's personal connection to the topic, as an immediate family member is a cancer survivor. 44 Due to the subjective nature of the topic for this integrative review, along with the geographically and socio-demographically diverse sample populations contributing to the eight studies included, many variables were present. These numerous variables led to findings that did not provide any clear direction for improving PCP-led CSC. However, as this integrative review aimed to understand the experiences of adult cancer survivors rather than to find definitive answers, this may not represent a true limitation but rather an opportunity to gain a deeper understanding of this topic's complexity. 45 Chapter Five: Conclusion This integrative review examined the experiences of adult cancer survivors receiving CSC from a PCP. Through data collection and analysis, this review highlighted the complex nature of CSC, as evidenced by the inconsistent and variable findings across and within the included eight studies. While some participants reported positive experiences with accessing CSC and the overall quality of their care from a PCP, others expressed dissatisfaction in these areas. Concerns regarding PCP knowledge and the organization of CSC were noted in all the studies in this integrative review, reflecting participants' dissatisfaction and underscoring the need for substantial changes in these areas. As cancer rates continue to rise globally, so does the demand for CSC (WHO, 2024). In a world facing shortages of healthcare providers (Boniol et al., 2022; Russo et al., 2023), it is crucial for healthcare providers, policymakers, researchers, educators, and government bodies to understand the experiences of cancer survivors. These experiences can inform future strategies to enhance the increasingly essential PCP-led CSC (Jefford et al., 2020; Nekhlyudov et al., 2017). 46 References Alemu, F. W., Yuan, J., Kadish, S., Son, S., Khan, S. S., Nulla, S. M., Nicholson, K., Wilk, P., Thornton, J. S., & Ali, S. (2024). Social determinants of unmet need for primary care: A systematic review. Systematic Reviews, 13(1), Article 252. https://doi.org/10.1186/s13643024-02647-5 Appleton, R., Nanton, V., Roscoe, J., & Dale, J. (2019, October). “Good care” throughout the prostate cancer pathway: Perspectives of patients and health professionals. European Journal of Oncology Nursing, 42, 36–41. https://doi.org/10.1016/j.ejon.2019.06.011 Blumenthal, D., Gumas, E. D., Shah, A., Gunja, M. Z., Williams II, R. D. (2024). Mirror, mirror 2024: A portrait of the failing U.S. health system: Comparing performance in 10 nations. The Commonwealth Fund. https://www.commonwealthfund.org/publications/fundreports/2024/sep/mirror-mirror-2024?utm_source=chatgpt.com Boekhout, A. H., Maunsell, E., Pond, G. R., Julian, J. A., Coyle, D., Levine, M. N., Grunfeld, E., & FUPII Trial Investigators. (2015). A survivorship care plan for breast cancer survivors: Extended results of a randomized clinical trial. Journal of Cancer Survivorship: Research and Practice, 9(4), 683–691. https://doi.org/10.1007/s11764-015-0443-1 Boniol, M., Kunjumen, T., Nair, T. S., Siyam, A., Campbell, J., & Diallo, K. (2022). The global health workforce stock and distribution in 2020 and 2030: A threat to equity and ‘universal’ health coverage? BMJ Global Health, 7(6), Article e009316. https://doi.org/10.1136/bmjgh-2022-009316 Canadian Institute for Health Information. (n.d.). Primary care. https://www.cihi.ca/en/topics/primary-care 47 Corscadden, L., Levesque, J. F., Lewis, V., Strumpf, E., Breton, M., & Russell, G. (2018). Factors associated with multiple barriers to access to primary care: An international analysis. International Journal for Equity in Health, 17(1), Article 28. https://doi.org/10.1186/s12939-018-0740-1 Covidence systematic review software, Veritas Health Innovation, Melbourne, Australia. Available at www.covidence.org Critical Appraisal Skills Programme. (2024a). CASP qualitative checklist [online]. https://caspuk.net/checklists/casp-qualitative-studies-checklist-fillable.pdf Critical Appraisal Skills Programme (2024b). CASP cross-sectional checklist [online]. https://casp-uk.net/casp-tools-checklists/cross-sectional-studies-checklist/ Downes, M. J., Brennan, M. L., Williams, H. C., & Dean, R. S. (2016). Development of a critical appraisal tool to assess the quality of cross-sectional studies (AXIS). BMJ Open, 6(12), Article e011458. https://doi.org/10.1136/bmjopen-2016-011458 Duineveld, L. A. M., Wieldraaijer, T., van Asselt, K. M., Nugteren, I. C., Donkervoort, S. C., van de Ven, A. W. H., Smits, A. B., van Geloven, A. A. W., Bemelman, W. A., Beverdam, F. H., van Tets, W. F., Govaert, M. J. P. M., Bosmans, J. E., Verdonck-de Leeuw, I. M., van Uden-Kraan, C. F., van Weert, H. C. P. M., & Wind, J. (2015). Improving care after colon cancer treatment in The Netherlands, personalised care to enhance quality of life (I CARE study): Study protocol for a randomised controlled trial. Trials, 16, Article 284. https://doi.org/10.1186/s13063-015-0798-7 Garpenhag, L., Halling, A., Calling, S., Rosell, L., & Larsson, A.-M. (2024). “Being ill was the easy part”: Exploring cancer survivors’ reactions to perceived challenges in engaging 48 with primary healthcare. International Journal of Qualitative Studies on Health and WellBeing, 19(1), Article 2361492. https://doi.org/10.1080/17482631.2024.2361492 Greenhalgh, T., & Taylor, R. (1997). How to read a paper: Papers that go beyond numbers (qualitative research). British Medical Journal, 315(7110), 740-743. https://doi.org/10.1136/bmj.315.7110.740 Grunfeld, E., Levine, M. N., Julian, J. A., Coyle, D., Szechtman, B., Mirsky, D., Verma, S., Dent, S., Sawka, C., Pritchard, K. I., Ginsburg, D., Wood, M., & Whelan, T. (2006). Randomized trial of long-term follow-up for early-stage breast cancer: A comparison of family physician versus specialist care. Journal of Clinical Oncology, 24(6), 848–855. https://doi.org/10.1200/JCO.2005.03.2235 Grunfeld, E., Julian, J. A., Pond, G., Maunsell, E., Coyle, D., Folkes, A., Joy, A. A., Provencher, L., Rayson, D., Rheaume, D. E., Porter, G. A., Paszat, L. F., Pritchard, K. I., Robidoux, A., Smith, S., Sussman, J., Dent, S., Sisler, J., Wiernikowski, J., & Levine, M. N. (2011). Evaluating survivorship care plans: Results of a randomized, clinical trial of patients with breast cancer. Journal of Clinical Oncology, 29(36), 4755–4762. https://doi.org/10.1200/JCO.2011.36.8373 Hong, Q. N., Pluye, P., Fàbregues, S., Bartlett, G., Boardman, F., Cargo, M., Dagenais, P., Gagnon, M.-P., Griffiths, F., Nicolau, B., O'Cathain, A., Rousseau, M.-C., & Vedel, I. (2019, July). Improving the content validity of the mixed methods appraisal tool: A modified e-Delphi study. Journal of Clinical Epidemiology, 111, 49– 59.e1. https://doi.org/10.1016/j.jclinepi.2019.03.008 Hudson, S. V., Miller, S. M., Hemler, J., Ferrante, J. M., Lyle, J., Oeffinger, K. C., & DiPaola, R. S. (2012). Adult cancer survivors discuss follow-up in primary care: “Not what I want, 49 but maybe what I need.” Annals of Family Medicine, 10(5), 418–427. https://doi.org/10.1370/afm.1379 Jefford, M., Rowland, J., Grunfeld, E., Richards, M., Maher, J., & Glaser, A. (2013). Implementing improved post-treatment care for cancer survivors in England, with reflections from Australia, Canada and the USA. British Journal of Cancer, 108(1), 14– 20. https://doi.org/10.1038/bjc.2012.554 Johnson, J. L., Adkins, D., & Chauvin, S. (2020). A review of the quality indicators of rigor in qualitative research. American Journal of Pharmaceutical Education, 84(1), Article 7120. https://doi.org/10.5688/ajpe7120 Kelly, J., Sadeghieh, T., & Adeli, K. (2014). Peer review in scientific publications: Benefits, critiques, & and survival guide. The Journal of the International Federation of Clinical Chemistry and Laboratory Medicine, 25(3), 227-243. Khan, N. F., Evans, J., & Rose, P. W. (2011). A qualitative study of unmet needs and interactions with primary care among cancer survivors. British Journal of Cancer, 105(1), S46–S51. https://doi.org/10.1038/bjc.2011.422 Kim, B., White, K., Tracy, M., Mahadeva, J., Marker, J., Ostroff, C., Acret, L., Willcock, S., & Rutherford, C. (2024). Experiences and perspectives of colorectal cancer survivors and general practitioners on the delivery of survivorship care in general practice: A mixed methods study. Australian Journal of Primary Health, 30(2), Article PY23140. https://doi.org/10.1071/PY23140 Lawson, E. (2023). The global primary care crisis. British Journal of General Practice, 73(726), 3. https://doi.org/10.3399/bjgp23X731469 50 Mao, J.J., Bowman, M. A., Stricker, C. T., DeMichele, A., Jacobs, L., Chan, D., & Armstrong, K. (2009). Delivery of survivorship care by primary care physicians: The perspective of breast cancer patients. Journal of Clinical Oncology, 27(6), 933–938. https://doi.org/10.1200/JCO.2008.18.0679 McMillan, S. S., Kendall, E., Sav, A., King, M. A., Whitty, J. A., Kelly, F., & Wheeler, A. J. (2013). Patient-centered approaches to health care: A systematic review of randomized controlled trials. Medical Care Research and Review, 70(6), 567–596. https://doi.org/10.1177/1077558713496318 Melillo, K. (2020). Formulate inclusion and exclusion criteria. In C. Toronto & R. Remington (Eds.), A step-by-step guide to conducting an integrative review (pp. 17-18). Springer. Melnyk, B., & Fineout-Overholt, E. (2023). Evidence-based practice in nursing & healthcare: A guide to best practice (5th ed.). Wolters Kluwer. Miller, K. D., Siegel, R. L., Lin, C. C., Mariotto, A. B., Kramer, J. L., Rowland, J. H., Stein, K. D., Alteri, R., & Jemal, A. (2016). Cancer treatment and survivorship statistics, 2016. CA, 66(4), 271–289. https://doi.org/10.3322/caac.21349 National Cancer Institute. (2024, October 17). Definitions- survivorship terms. Division of Cancer Control and Population Sciences, National Institute of Health. https://cancercontrol.cancer.gov/ocs/definitions#:~:text=Cancer%20survivorship%20is% 20a%20state,by%20the%20National%20Cancer%20Institute National Cancer Institute. (n.d.). Primary care provider. In NCI dictionary of cancer terms. Retrieved January 15, 2025, from https://www.cancer.gov/publications/dictionaries/cancer-terms/def/primary-care-provider 51 Nekhlyudov, L., O’malley, D. M., & Hudson, S.V. (2017). Integrating primary care providers in the care of cancer survivors: Gaps in evidence and future opportunities. The Lancet Oncology, 18(1), e30–e38. https://doi.org/10.1016/S1470-2045(16)30570-8 Nekhlyudov, L., Mollica, M., Jacobsen, P., Mayer, D., Shulman, L., & Geiger, A. (2019). Developing a quality of cancer survivorship care framework: Implications for clinical care, research, and policy. Journal of the National Cancer Institute, 111(11), 1120–1130. https://doi.org/10.1093/jnci/djz089 Nyarko, E., Metz, J. M., Nguyen, G.T., Hampshire, M. K., Jacobs, L. A., & Mao, J. J. (2015, October). Cancer survivors’ perspectives on delivery of survivorship care by primary care physicians: An internet-based survey. BMC Family Practice, 16, Article 143. https://doi.org/10.1186/s12875-015-0367-x Rathert, C., Wyrwich, M. D., & Boren, S. A. (2013). Patient-centered care and outcomes: A systematic review of the literature. Medical Care Research and Review, 70(4), 351–379. https://doi.org/10.1177/1077558712465774 Reeve, J., Irving, G., & Dowrick, C. F. (2011). Can generalism help revive the primary healthcare vision? Journal of the Royal Society of Medicine, 104(10), 395–400. https://doi.org/10.1258/jrsm.2011.110097 Russo, G., Perelman, J., Zapata, T., & Šantrić-Milićević, M. (2023). The layered crisis of the primary care medical workforce in the European region: What evidence do we need to identify causes and solutions? Human Resources for Health, 21(1), Article 55. https://doi.org/10.1186/s12960-023-00842-4 Rutherford, C., Kim, B., White, K., Ostroff, C., Acret, L., Tracy, M., Mahadeva, J., & Willcock, S. M. (2023). Experiences of colorectal cancer survivors in returning to primary 52 coordinated healthcare following treatment. Australian Journal of Primary Health, 29(5), 463–470. https://doi.org/10.1071/PY22201 Santana, M. J., Manalili, K., Jolley, R. J, Zelinsky, S., Quan, H., & Lu, M. (2018). How to practice person-centred care: A conceptual framework. Health Expectations, 21(2), 429– 440. https://doi.org/10.1111/hex.12640 Sargeant J. (2012). Qualitative research part II: Participants, analysis, and quality assurance. Journal of Graduate Medical Education, 4(1), 1–3. https://doi.org/10.4300/JGME-D-11-00307.1 Shahaed, H., Glazier, R. H., Anderson, M., Barbazza, E., Bos, V. L. L. C., Saunes, I. S., Auvinen, J., Daneshvarfard, M., & Kiran, T. (2023). Primary care for all: Lessons for Canada from peer countries with high primary care attachment. Canadian Medical Association Journal, 195(47), e1628–e1636. https://doi.org/10.1503/cmaj.221824 Stratton, S. J. (2021). Population research: Convenience sampling strategies. Prehospital and Disaster Medicine, 36(4), 373–374. https://doi.org/10.1017/S1049023X21000649 Sulik, G. (2013). What cancer survivorship means. AMA Journal of Ethics, 15(8), 697-703. https://doi.org/10.1001/virtualmentor.2013.15.8.msoc1-1308 Toronto, C. E., & Remington, R. (Eds.) (2020). A step-by-step guide to conducting an integrative review. Springer. University of Northern British Columbia (2024). Geoffrey R. Weller Library: A-Z databases. https://libguides.unbc.ca/az/databases Vos, J. A. M., Wieldraaijer, T., van Weert, H. C. P. M., & van Asselt, K. M. (2021). Survivorship care for cancer patients in primary versus secondary care: A systematic review. Journal of 53 Cancer Survivorship: Research and Practice, 15(1), 66–76. https://doi.org/10.1007/s11764-020-00911-w Vos, J. A. M., van Miltenburg, V, Beverdam, F., van Weert, H. C. P. M., & van Asselt, K. M. (2023). Patient experiences of GP-led colon cancer survivorship care: A Dutch mixedmethods evaluation. The British Journal of General Practice, 73(727), e115–e123. https://doi.org/10.3399/BJGP.2022.0104 Wang, X., & Cheng, Z. (2020). Cross-sectional studies: Strengths, weaknesses, and recommendations. CHEST, 158(1), S65–S71. https://doi.org/10.1016/j.chest.2020.03.012 World Health Organization. (2024, February 1). Global cancer burden growing, amidst mounting need for services. https://www.who.int/news/item/01-02-2024-global-cancer-burdengrowing--amidst-mounting-need-for-services World Health Organization. (n.d.). Integrated primary care for UHC. Retrieved January 2025, from https://www.who.int/teams/integrated-health-services/clinical-services-andsystems/primary-care Appendix A Integrative Literature Review Matrix Author Title Appleton et al. Garpenhag et al. “Good care” “Being ill was the A qualitative study of Experiences and Delivery of Cancer survivors’ Experiences of Patient experiences of throughout the easy part”: exploring unmet needs and perspectives of survivorship care by perspectives on colorectal cancer GP-led colon cancer prostate cancer cancer survivors’ interactions with colorectal cancer primary care delivery of survivors in returning survivorship care: a pathway: reactions to perceived primary care among survivors and general physicians: The survivorship care by to primary Dutch mixed-methods Perspectives of challenges in cancer survivors practitioners on the perspective of breast primary care coordinated evaluation patients and health engaging with delivery of cancer patients physicians: an healthcare following professionals primary healthcare survivorship care in internet-based survey treatment Khan et al. Kim et al. Mao et al. Nyarko et al. Rutherford et al. Vos et al. general practice: a Journal mixed methods study European Journal of International Journal British Journal of Australian Journal of Journal of Clinical BioMed Central Australian Journal of British Journal of Oncology Nursing of Qualitative Studies Cancer Primary Health Oncology Family Practice Primary Health General Practice on Health and Well- Year Country Objective Being 2019 2024 2011 2024 2009 2015 2023 2023 UK Sweden UK Australia USA USA Australia Netherlands Investigate patient Explore reactions to Explore the Explore the Describe the Evaluate cancer explore CRC Explore patients’ and primary care and opinions about experiences of experiences and perceived survivors’ survivors experience experiences of GP-led based health perceived challenges individuals who have perspectives of CRC survivorship care perspectives on PCP- of post-treatment care versus surgeon-led professionals' associated with PHC survived at least 5 survivors and GPs on delivered by PCPs, delivered in the community and survivorship care perspectives of what access and quality years following a current approaches to identify the factors survivorship care their perspectives on constitutes ‘good among cancer cancer diagnosis, and monitoring and that are associated the role of their GP in care’ for men with survivors in Sweden, to describe perceived managing sequelae of with higher rankings coordinating prostate cancer, including how they unmet needs and CRC in survivor-perceived supportive care including limiting or have acted to adapt to interactions with treatment survivorship care, and facilitating factors challenges primary care identify survivor recommendations for breast cancer followup care 54 Author Study Design Data Collection Appleton et al. Garpenhag et al. Qualitative Qualitative investigation descriptive Khan et al. Qualitative Kim et al. Mixed-methods Mao et al. Nyarko et al. Rutherford et al. Vos et al. Cross-sectional Cross-sectional Qualitative with Mixed-methods survey survey interpretive (randomized description controlled trial with qualitative portion) Semi-structured Digital focus group Interviews (open- Cross-sectional Self-administered Internet-based cross- Semi-structured Questionnaires sent to interviews interviews ended and semi- surveys and one-on- survey at routine sectional survey interviews participants for structured) one qualitative follow-up quantitative portion interviews appointment (3, 6, 12 months post cancer treatment) Interviews (openended and semistructured) for qualitative portion (done 3-6 years post Recruitment Method cancer treatment) Participants were Advertisements Iterative and Electronic Research assistants Questionnaire placed Advertised through Quantitative portion: recruited from five spread digitally by six purposive sampling advertisement with screened medical on OncoLink website investigators’ Recruited by treating GP practices whose patient advocacy information sheet and records and (no external collegial networks, physicians or practice nurses were groups representing Selected from link to complete an approached potential advertising/recruitme consumer oncology nurses after attending a training people with the respondents to a anonymous survey or study participants for nt) organizations and surgery or after course in cancer relevant diagnosis linked survey covered express interest for enrollment at their social media chemotherapy by Oxford Cancer interview (distributed regular follow-up appointments follow up Intelligence Unit and through major Done through either Qualitative portion: Eligible patients Northern and professional primary an invitation email or Call was placed in the were identified by Yorkshire Cancer care and consumer an open study newsletter and the practice nurse Registry societies and advertisement on a participants organizations across notice board, responded. Australia) membership Then, purposive newsletter or social sampling used to variation based on Also advertised media page with obtain representative tumour site, age, through email appropriate approvals patient sample. gender, geographical invitations to location, time since researchers’ collegial using a convenience sampling approach Participants selected for maximum 55 Author Appleton et al. Garpenhag et al. Mao et al. Nyarko et al. Kim et al. diagnosis, responses networks and social Also used snowball to questionnaire media sites recruitment strategy subscales on Sample Rutherford et al. Khan et al. Vos et al. upon interview depression/anxiety/ca Snowball recruitment ncer-related needs used after participants completion completed a survey 10 participants 20 participants 40 participants 51 participants 300 participants 352 participants 19 participants Quantitative: 303 were randomized Qualitative: 26 Cancer Type(s) Prostate Inclusion Criteria Men who had ever Breast, prostate, lung, Breast, colorectal, Colorectal Breast 30 different types Colorectal colorectal, or prostate Colorectal 18 years old or older Postmenopausal None stated Aged ≥18 years Quantitative: Stage I- Self-reported initiated Had completed History of Had completed treatment for breast, primary treatment in histologically treatment following a Men who were prostate, lung, Australia following a confirmed, stage I to CRC stage 1–3 Qualitative: All registered to one of colorectal, or CRC diagnosis III, hormone diagnosis patients had to be the participating GP malignant melanoma practices cancers malignant melanoma Age 18 years or older received a diagnosis of prostate cancer At least 5 years post diagnosis of cancer III colon cancer receptor–positive Could share thoughts breast cancer survivors finished 3 year Spoke English follow-up period and experiences in English Currently taking a third-generation Able to give written aromatase inhibitor informed consent (anastrozole, letrozole, or exemestane) Seen between April and October 2007 Completion of chemotherapy or 56 Author Appleton et al. Garpenhag et al. Khan et al. Kim et al. Mao et al. Nyarko et al. Rutherford et al. Vos et al. radiotherapy at least 1 month before enrollment Approval of the patient's primary oncologist patient's ability to understand and provide informed Exclusion Criteria consent in English None stated Terminal phase None stated None stated cancer Discontinuation of None stated None stated Hereditary colorectal aromatase inhibitor cancer, rectal cancer, therapy inflammatory bowel Non-Swedish speaker disease related cancer, Metastatic disease history of second primary cancer within Not keeping 15 years scheduled appointments Previous participation in other research with conflicting endpoints Not able to speak Dutch or English Needing specialised care after surgical FindingsPositive Experiences treatment Appreciated the None noted Primary care services None noted Survivors highly 66.8% endorsed PCP Most felt that GPs 9.6/10 satisfaction efforts made by were generally endorsed the care delivery of holistic were vital in post- with GP-led, 9.4/10 PCP’s to seek perceived as easy to provided by their PCP care treatment supportive with surgeon-led information on their access on items related to care and viewed as a survivorship care (SD psychological well- key person that could 1.1 and confidence being, health influence all aspects interval -0.08-0.5) behalf 57 Author Appleton et al. Garpenhag et al. Khan et al. Kim et al. Mao et al. Nyarko et al. Rutherford et al. Vos et al. Talking to GP’s Some GPs had promotion, and 64.2% endorsed PCP of a patient’s care often reduced encouraged their holism (73%, 73%, delivery of experience post- Appreciated a follow- anxiety patients to contact and 78%, psychosocial support treatment up schedule that was them with any respectively) 61.1% endorsed PCP ‘Valued the support’ in GP and surgeon led Primary Care delivery of General (when needs were trial arms Feelings that ‘they’re Assessment Survey Care met) [the GP] there and trust score of the GP visits often attend to matters in a sample was 73 out of Participants who were platform was rarely facilitated discussion timely way maximum score of positive about their used, most felt it of sensitive issues, 100, with a standard GP experiences would not have any which was deviation of 15 described their GP as added value since ‘sympathetic’ and they had little ‘provided emotional complaints to begin support’: with Time spent with ongoing problems GP’s increased trust overall welcomed More personal than provided to patients Access to the eHealth 8/10 PCP trust score specialist appointments ‘My GP was accessible by email’, Friendlier, less ‘…squeezed me in for intimidating, less appointments’, hurried (than ‘…prioritised me specialist care) when I was sick’ and ‘…phoned to check Continuity with up on me’. same practitioner was positive GP was someone who they trusted and had established good rapport For those with a longstanding relationship with their GP, they were a ‘good 58 Author Appleton et al. Garpenhag et al. Khan et al. Kim et al. Mao et al. Nyarko et al. Rutherford et al. Vos et al. consistent part of my whole journey’ FindingsNegative Experiences Unclear information Even basic activities Majority of cancer n = 41, 80% found it Only 28% of the Cancer care follow-up Felt information Despite being (about leaving can be burdensome survivors did not see difficult to discuss survivors felt that (42% perceived them should come from satisfied with care, a substantial role for certain concerns with their PCPs and as knowledgeable) [their] health care both groups doubted Being ill negatively their GP in their long- their GP, such as oncologists team’ but were if GP’s had sufficient Feeling displaced affects the ability to term cancer care sexual and intimacy communicate well Late or long-term needing to find it knowledge to care for (after leaving act independently effects of cancer elsewhere patients during the specialty care) specialty care) concerns (n = 17, Most spoke of cancer 33%), psychological Most items related to therapy (44% Struggle to acquire being ‘in the past’, or emotional concerns specific cancer perceived them as Better preparation at Hard to adequate help from and assessed (n = 11, 22%), survivorship care knowledgeable) discharge, such as Some patients noted communicate PHC services themselves as healthy feelings of isolation (symptom diagnosis dedicated time to their GP’s had sensitive issues whole disease process individuals not (n = 10, 20%), and management, Diagnosis and discuss and provide difficulties Feeling forced to be requiring active cognitive issues (n = follow-up, and treatment of information on what interpreting test Switching to an persuasive or monitoring. 9, 18%), and financial surveillance for late symptoms related to to expect post- results unfamiliar GP could stubborn concerns (n = 6, 12%) effects of cancer cancer or cancer treatment, suggested be unsettling therapies) had lower therapy 41.8% self-management Confusion about Feeling the need to Desire for ongoing psychological Common reasons for endorsements (41%, perceived them as strategies, who to follow-up schedule make up for support/depression not discussing post- 50%, and 59%, knowledgeable) contact and for what perceived non-action treatment treatment concerns respectively) from PHC providers were their perception issues, what issues No clear point of 40% thought they should be contact for patients in GP led care in terms of Lack of availability of that not much could 56% gave a “poor” or communication was concerned about, and understanding and complementary and be done to help (n = “average” rating on good with cancer available allied health managing their alternative therapies 17, 33%), and the cohesive care (ie, specialist services, was needed condition within primary and cancer specialist had PCPs and oncologists secondary care during informed them that working together to Overall cancer Felt ‘unsatisfied’ and Feeling as though and after the the problem would care for them) survivors have ‘disappointed’ when they had to be a treatment gradually improve (n unfavorable needs were not met = 15, 29%) perceptions of cancer- healthcare liaison Poor communication Disappointed by their Less common reasons care delivered by GP’s ‘lack of insight Feeling like there is during their long-term were their perception PCPs into local services’ no availability to see care, particularly that their concerns and inability to were minor (n = 12, adequately support 59 specific survivorship more information PHC providers (leads Expressed a need for Author Appleton et al. Garpenhag et al. Khan et al. to trying to change relating to late effects 24%), feeling them with referrals providers, arrange of cancer treatment awkward or and access to services care outside of PHC, Kim et al. Mao et al. Rutherford et al. Nyarko et al. Vos et al. embarrassed (n = 12, or seek advice from Viewed GP’s as non- 24%), or lacking Unless the providers online support groups experts in cancer confidence to raise had experience in certain concerns (n = post-CRC treatment Viewed GP’s as too 12, 24%), feeling that effects, or cancer Feeling excluded or busy to be ‘bothered’ their concerns were more broadly, ‘they forgotten after with cancer-related too sensitive or were not particularly discharge from cancer issues personal (n = 11, helpful’. instead of PHC) care specialists 22%), or thinking that Felt that a lack of the GP would not be Generally ‘ ...did not Distrust in PHC continuity in primary able to help (n = 10, ask about cancer professionals’ care hindered 20%). A small treatment or the competence in discussions relating to proportion of impact it had cancer-related matters cancer and it’s long- participants (n = 6, term effects 12%) reported that Time was a barrier for Worry about how (challenging to see they did not raise a discussion about they will manage the same PCP at concern or issue they general wellbeing their needs in case of repeat visits due to were experiencing after cancer’ recurrence of cancer high turnover, full with their GP, because schedules, difficulty they felt that their GP Felt ‘ …[their] GP did Feelings that clinical finding their own seemed disinterested not understand guidelines are not PCP) or hurried. Half of cancer-related issues followed, or that the participants (n = 26, patient is responsible Want more 51%) felt more Difficult to talk about for ensuring they are notification of follow- comfortable emotional concerns up testing and results discussing sensitive Easier to be ill, harder concerns if the GP Some people had to recover (because brought it up nobody to help them they knew where to coordinate care, Half of the survivor which was very specialty care participants (n = 25, challenging when compared to PHC) 49%) believed that they were too ill to do their GPs had ‘some’ it 60 go with cancer Author Appleton et al. Garpenhag et al. Khan et al. Kim et al. Mao et al. Nyarko et al. Rutherford et al. Felt essential to have understanding of the good sequelae of CRC Difficulties getting language/expression treatment, with prompt appointments skills to protect their slightly fewer (n = 16, and GP mobility interests 31%) feeling that contributed to their GPs had a dissatisfaction with ‘good’ understanding the care received strength to make Felt that their GPs Rural GPs were things happen and had a good (n = 18, perceived as having prevent feeling 35%) or some (n = inadequate overwhelmed by 19, 37%) knowledge knowledge of cancer adversity (severe of available services, treatment effects, illness and treatment resources and other survivorship care and side effects decreased local health care who to refer their this stamina) professionals to refer patients to Felt essential to have Vos et al. stamina and inner to Patients without a GP felt they had to advocate for themselves and educate their GPs about side effects FindingsNeutral Experiences post-surgery Almost half (n = 25, Rated primary care 59.8/100 rating of Acknowledged that Patients did not see 49%) felt that GPs survivorship care PCP delivery of CSC ‘GPs are generalists’ an important role for should be their main 65/100 with standard health care provider deviation of 17 to coordinate follow- and, therefore, it was the GP or surgeon Non-white patients ‘unreasonable to regarding and pts who visit their expect them to know psychological care up care post-cancer Survivors who visited PCP frequently rate about all cancer treatment their PCPs more often PCP CSC issues’ had a higher rating on significantly higher Almost half (n = 26, the PCDSCS (P < (maybe they consider Felt that ‘the current more convenient, 51%) of participants .001 for trend) different things health system needs practical. important, more improving, so that GP care would be 61 were ‘satisfied’ with Expectation was that Author Appleton et al. Garpenhag et al. Khan et al. Kim et al. Mao et al. Nyarko et al. Rutherford et al. Vos et al. the help or support Non white race frequent visits mean GPs were better Expected GP to look they received from independently more time to build supported further than only the their GPs. However, a predicted higher trust) further 37% (n = 19) rating of survivorship were only somewhat care (β = 7.56; 95% Higher levels of trust health care providers satisfied or not at all CI, 1.81 to 13.31; P = with PCP generally after completing No important satisfied with their .01 meant higher scores cancer treatment was differences seen in for all areas (p<0.001) varied quality aspects of care care (11%) wound and physical Access and referral to recovery Trust in PCP was More frequent PCP significantly visits, higher trust in ‘Having an existing between groups (GP/Surgeon led) in associated with higher PCP, and perceiving relationship with quantitative portion perceived PCP as one of the [their] GP made it survivorship care (β = people primarily easier for [them] to 0.727; 95% CI, 0.62 responsible for care bring up difficult to 0.83; P = .001) were associated with issues’ higher PCDSCS scores (p<0.001) Some liked being very involved in Non-white patients coordinating their had mean PCDSCS care, others did not score significantly Critical AppraisalPositives higher (p= 0.0035) Thematic analysis Clear aim Large sample size Clear aim Clear aim Clear aim done Results clearly laid Appropriate Diverse range of Survey developed, Appropriate methodology experiences regarding guided by the methodology with cross-sectional study out and discussed Involvement of cancer type, time domains of enquiry Clear data collection since cancer and then pilot tested and analysis treatment, gender, before administering patient representatives in needs, mental health Findings were clear the data analysis. Enabled refining the Recent study Multiple types of Recent study cancer included, making it more the study team and generally applicable population Sampling frame is representative of target population regarding clinical characteristics Internal consistency data saturation met good to excellent Iterative interviews to Interviews/surveys explore new issues pilot tested Used previously validated scale for measurement Fairly even mix between rural, urban, raised to identify gaps in research collection/analysis suburban→ increased generalizability 30 different cancer types responded→ Data Interview guide done and checked by created by diverse multiple researchers group Member checks done 62 themes identified by Clear target Interviews done until Author Appleton et al. Garpenhag et al. ensuring relevancy Thematic analysis from patient done perspective. Khan et al. Kim et al. ended and semi- Pre-determined researcher involved in structured) recruitment target data for patients (10) was collection/analysis Needed 64 researcher participants in each Rigorous data Thematic analysis relevance, which they analysis used achieved Objective Multiple Data saturation Scale they developed measurements can methods/places of achieved with was piloted and decrease bias recruitment to qualitative portion Only 5% declined enrolment Thorough discussion group for clinical modified prior to Recent study Vos et al. Codes verified by 2nd participant selection attained Rutherford et al. generalizability criteria used for completed (open- Nyarko et al. increased Clear inclusion In-depth interviews More than 1 Mao et al. increase administration Trust subscale used generalizability and Thematic analysis clinical significance done for qualitative portion was previously Newer study verified Newer study Variables not significant at P= 0.10 level in bivariate analysis were not included Discussion of findings and contribution to existing knowledge and how it can be used moving forwards was thorough Critical AppraisalNegatives Small sample size No discussion on Poor representation 51 surveys from CRC Sample was limited to Internet based survey Participants had to be Possible selection researcher’s potential from ethnic minorities survivors (small early-stage BCSs creates selection bias English speaking, so bias in quantitative sample size for from a tertiary care may not represent portion for patients Sample was taken widespread centre, which general population who are already from 2 specific areas distribution of survey) potentially limits the High chance of bias bias’s or relationship due to convenience with participants sampling (those over 60, minorities, lower education are likely 63 to be under sampled and therefore less Author Appleton et al. Poor generally Garpenhag et al. Khan et al. Data saturation not of UK→ decreased degree to which the discussed generalizability as Response rate data can be experiences may unknown generalized Poor general Sample was applicability Poor general Kim et al. differ in other areas Data saturation not applicability discussed (Sweden’s healthcare Data saturation not applicability (CRC predominantly white, system is dissimilar to discussed survivor survey limiting responders were generalization of data No mention of the many other) researchers’ views and potential bias’s Older study Participants had to Rutherford et al. Vos et al. due to less access applicable to general positive about their to/use of internet) population. GP Mao et al. younger than the average CRC Poorly implemented survivor) cross-sectional study Nyarko et al. 80% Caucasian→ decreased generalizability/clinic al Challenging to measure aspects of quality of care with population size No open-ended smaller than the usual questions (leaves no for CQI room for other answers/opinions/exp speak Swedish, Limited discussion excluding possible regarding ethics or participants the researcher’s Poor general measure, which does views, potential applicability (79% not leave room for Poor general biases, or relationship female) participants to expand unknown response GP’s providing care applicability with the on or clarify their rate were all doing this for (recruitment through research/participants patient advocacy (Likert scales used for Electronic responses→ leads to distribution/recruitme poor clinical significance) lanations) No discussion of 81.5% were living in the USA, 18.5% in 16 No discussion nt likely excludes include people who regarding how many many CRC survivor are more selected respondents perspectives (elderly, Participants already resourceful/healthy/en accepted/declined low socioeconomic part of a different generalizability since gaged) participation status, etc) study, potential for majority were in one bias country) Older study No available copy of member checking survey to view, Participants all due to technology so one interview left out power calculation and groups which often No discussion of Some missing data other countries (potential bias and the first time, so confidence in GP led care could increase over time decreased RCT not blinded 5% did not adhere and dropped out after 1 year unclear on exact recruited from one Video conferencing questions and cancer centre, Large number of used for interviews response options limiting data eligible patients generalizability declined participation (not all people are comfortable with this) Measurements unclear Did not include variables such as duration of 64 relationship with Author Appleton et al. Garpenhag et al. Khan et al. Kim et al. Mao et al. Nyarko et al. Rutherford et al. Vos et al. PCPs, trust in oncology providers, and health status Older study Note. For studies that also included the experiences of healthcare providers, only the data from the patient experiences was included in this Appendix. 65