TRANSITION CARE FOR YOUNG ADULTS WITH COMPLEX CHRONIC
CONDITIONS EXITING PEDIATRIC CARE: IMPLICATIONS FOR PRIMARY
CARE PROVIDERS
by
Emily Sarah Leake
BScN, Langara College, 2010

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
January 2019
© Emily Leake, 2019

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Abstract
Due to advances in medicine, more children with complex chronic conditions are living
longer requiring them to transition into adult health services. The health care transition
process can be inconsistent due to inadequate planning, poor service coordination or absent
because of a lack of resources, and gaps in professional experience, education and training.
This process is further complicated by the physical and psychosocial changes associated with
adolescence. Such changes result in challenges with treatment and disengagement with care.
For adolescent populations with a specific disease i.e. diabetes, focused transition programs
exist that involve primary and specialist providers with expertise. However, in those with comorbidities transition programs are limited or absent resulting in young adults with complex
chronic conditions leaving pediatric specialty services without a coordinated approach to
their care. In conjunction with specialist provider changes there is little information available
to guide primary care providers as to how to coordinate care for these young adults during
this critical time of change. The purpose of this capstone is to identify strategies that primary
care providers can use to enhance the transition process for young adults with complex
chronic conditions exiting out of pediatric services. Twelve articles were analyzed utilizing
Whittemore and Knafl’s (2005) approach to the integrative literature review. Results suggest
that the transition process for this population are multifaceted, but are largely affected by a
fragmented health system that impedes communication and coordination of care. Primary
care providers are encouraged to be aware of the impact these factors have on the quality of
care and health outcomes of their clients. Further, recommendations for enhancing the
transition process are discussed, and strategies for the primary care setting are presented.
Keywords: primary care, health care transition, complex chronic conditions

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Table of Contents
Abstract ..................................................................................................................................... ii
Table of Contents ..................................................................................................................... iii
List of Tables ............................................................................................................................ v
Glossary ................................................................................................................................... vi
Acknowledgments..................................................................................................................... x
Chapter I: Introduction.............................................................................................................. 1
Chapter II: Background and Context ........................................................................................ 7
Epidemiology, Impact, and Risk Factors .............................................................................. 7
Complex Chronic Conditions ............................................................................................... 9
Health Care Transition in BC ............................................................................................. 11
Barriers in Health Care Transition ...................................................................................... 14
Pediatric to adult health care systems. ............................................................................ 15
Adult-oriented services. .................................................................................................. 17
Information exchange and communication. .................................................................... 18
Health Care Transition and Primary Health Care ............................................................... 19
Chapter III: Methods ............................................................................................................... 23
Literature Search ................................................................................................................. 24
Inclusion and exclusion criteria. ..................................................................................... 25
Stage one: Searching electronic databases ...................................................................... 27
Stage two: Screening abstracts and in-depth review....................................................... 28
Stage Three: Hand searching, grey literature and networking. ....................................... 29
Data Evaluation................................................................................................................... 30
Data Analysis ...................................................................................................................... 30
Chapter IV: Findings............................................................................................................... 32
Relationships ....................................................................................................................... 34
Parent-patient relationships............................................................................................. 34
Provider-patient relationships. ........................................................................................ 37
Fear and Anxiety ................................................................................................................. 40
Patients’ perceptions and experiences. ........................................................................... 40
Parents’ perceptions and experiences. ............................................................................ 43
Preparedness ....................................................................................................................... 43
Anticipatory guidance and health promotion for patients............................................... 44
Health care provider training and proficiency. ............................................................... 48
Communication and Collaboration ..................................................................................... 50
Provider-provider communication. ................................................................................. 50
Provider-parent communication...................................................................................... 55
Chapter V: Discussion ............................................................................................................ 57
Relationships ....................................................................................................................... 58
Fear and Anxiety ................................................................................................................. 60
Preparedness ....................................................................................................................... 61

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Communication and Collaboration ..................................................................................... 63
Primary Care Practice ......................................................................................................... 65
Recommendations for Primary Care Practice ..................................................................... 67
Recommendations for Education and Professional Development ...................................... 71
Recommendations for Policy .............................................................................................. 72
Recommendations for Future Research .............................................................................. 73
Limitations .......................................................................................................................... 75
Chapter VI: Conclusion .......................................................................................................... 77
References ............................................................................................................................... 78
Appendix A: Database Search Strategy and Results .............................................................. 88
Appendix B: Literature Search Flow Diagram ....................................................................... 89
Grey Literature Search Flow Diagram .................................................................................... 90
Appendix C: Level of Evidence Table.................................................................................... 91
Appendix D: Critical Appraisal Skills Program (CASP) Systematic Review Checklist ........ 92
CASP Qualitative Study Checklist ......................................................................................... 93
CASP Cohort Study Checklist ................................................................................................ 94
Appendix E: Maryland Scientific Methods Scale................................................................... 95
Appendix F: Literature Review Matrix................................................................................... 96

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List of Tables
Table 1: Differences between Pediatric and Adult Health Care Systems in British Columbia
Table 2: Inclusion and Exclusion Criteria
Table 3: Recommendations for Primary Care Practice

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Glossary
Adolescence: The period of life between childhood and the world of work, independence,
and adulthood. It begins with the onset of puberty and ends when an adult identity and
behaviors are attained (Canadian Pediatric Society [CPS], 2003; Paone & Whitehouse,
2011).
Congenital anomalies: Abnormalities that are present at birth, even if not diagnosed until
months or years later. They are usually structural in nature and can be present from the time
of conception, but largely occur in the embryonic period or in the early fetal period (Public
Health Agency of Canada [PHAC], 2014).
Chronic: Persisting for more than 3 months, often for the remainder of a person’s lifetime
(Myers et al., 2006).
Co-morbidities: The presence of one or more additional diseases co-occurring with a
primary disease (Valderas, Starfield, Sibbald, Salibury, & Roland, 2009).
Complex Chronic Conditions: Any medical condition that can reasonably be expected to
last at least 12 months (unless death intervenes) and involve either several different organ
systems or one organ system severely enough to require specialty pediatric care and probably
some period of hospitalization in a tertiary care center (Freudtner, Christakis, & Connell,
2000; Goossens, Bovijn, Gewillig, Budts, & Moons, 2016).
Family Centered Care: A philosophical approach that respects and supports the central role
that families play in their young adult’s life. It is care marked by respect, information
sharing, collaboration, confidence building and family to family support (Paone &
Whitehouse, 2011).

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Family Nurse Practitioner: Registered nurses who have successfully completed graduate
level education and training in advanced practice nursing. They provide care from a holistic
nursing perspective, integrated with the autonomous diagnosis and treatment of acute and
chronic illnesses, including prescribing medications and interpreting diagnostic tests (British
Columbia College of Nurse Professionals [BCCNP], 2018b).
Health Care Transition: The purposeful, planned movement of adolescents and young
adults with chronic physical and medical conditions from child-centered care to the adultoriented health care system (Blum et al., 1993).
Health Promotion: Health promotion is the process of enabling people to increase control
over, and to improve their health (World Health Organization [WHO], 1998).
Multidisciplinary: When professionals from various disciplines work together to provide
continuous, comprehensive care that addresses as many of the patient’s needs as possible
(Mitchell, Tieman & Shelby-James, 2008).
Multimorbidity: Having two or more concurrent chronic conditions that collectively have
an adverse effect on health status, function, or quality of life and that require complex
healthcare management, decision-making, or coordination (National Quality Forum, 2012,
p.7).
Pediatrician: A doctor who specializes in the care of infants, children, and adolescents up to
approximately age 19 years. Like other medical specialists, pediatricians train for an
additional 4 to 6 years after obtaining their medical degree. General pediatricians see patients
with a wide range of problems, such as prematurity, acute and chronic medical illnesses,
developmental disorders, mental health challenges, diabetes, cancer, complex heart disease,
asthma and allergies (British Columbia Pediatric Society [BCPS], n.d.).

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Pediatric Subspecialist: A pediatrician who cares for infants, children, and adolescents with
very specific and/or complex needs (BCPS, n.d.).
Patient Centered Care: An approach to care where the patient’s specific health needs and
desired health outcomes are the driving force behind all health care decisions. A mutual
partnership between patients and health care providers ensures that providers treat patients
from both a medical and psychosocial perspective including their emotional, mental,
spiritual, social and financial needs (Canadian Interprofessional Health Collaborative, 2009).
Primary Care: The delivery of community-based clinical health-care services (Canadian
Nurses Association [CNA], 2015).
Primary Care Provider: Health professionals trained in family medicine, who take primary
responsibility for an established group of patients for whom they provide: longitudinal
person-focused care; comprehensive care for most health needs, first contact assessment for
new health care needs; and referral and coordination of care when it must be sought
elsewhere (BCCNP, 2018a).
Primary Health Care: Essential health care (promotive, preventative, rehabilitative, and
supportive) that focusses on preventing illness and promoting health with optimal individual
and community involvement. It is both a philosophy and approach that provides a framework
for health care delivery systems (BCCNP, 2018a).
Self-management: Is the patient’s ability to manage a chronic health condition through
problem-solving, decision-making, and self-tailoring. Self-management can be supported by
knowledge-based education, psychological treatment, and technical skill building (Paone &
Whitehouse, 2011, p.14).

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Shared Care: Combines the skills and knowledge of a range of health professionals who
share joint responsibility to manage an individual’s condition. It also includes monitoring
and exchanging patient data and sharing skills and knowledge between disciplines (Paone &
Whitehouse, 2011, p.14).
Transfer: A discrete event occurring within transition involving the actual hand-off from
pediatric to adult provider (Gray, Schaefer, Resmini-Rawlinson, & Wagoner, 2018).
Transition Care: The work undertaken by health care providers to prepare youth with
chronic health conditions for the adult health care system and the management of their health
condition into adulthood (Gravelle, Davidson, & Chilvers, 2012).
Transition Readiness: The process of building the capacity of adolescents and those
involved in their care to prepare for, enter, continue, and complete transition. It involves
multiple components, is measurable and potentially modifiable (Campbell et al., 2016).
Young Adults: A newly recognized stage in later adolescents into young adulthood, from
18-24 years of age, distinctly different from both adolescence and adulthood behaviorally,
demographically and subjectively. Although they feel they should make their own decision,
“emerging adults” may not yet feel committed to adult standards of behavior and an adult
level of responsibly (Paone & Whitehouse, 2011, p.13).

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Acknowledgments
First and foremost, I would like to thank my supervisory committee Caroline Sanders PhD,
MBE, BSc(Hons), PGD, PGC, NIHR-PD, RN and Heidi Dunbar NP-F, MN-NP, IFMCP for
their ongoing encouragement and guidance in pushing me to stick with it and complete this
paper. I would also like to thank my family and friends for being my cheerleaders along the
way and providing me with unconditional love and reassurance throughout the entirety of my
graduate studies. I am forever grateful for everyone’s support as I absolutely could not have
done this without you. Lastly, I would like to thank my primary care provider, Dr. Colleen
Lee, and my specialty team at BC Children’s; Dr. Geoff Blair, Dr. Hjalmar W. Johnson and
nurse clinician Janice Penner, for working together endlessly throughout my childhood and
adolescence to ensure that my transition into adult services was as smooth as possible. Not
only have you all inspired me to choose a career in health care, but you also showed me early
on how important it is to be able to work together as a team while ensuring that patients and
families are included along the way, thank you.

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Chapter I: Introduction
This chapter offers an introduction to the key areas within this literature review.
Specifically, it introduces the ideas, concepts and challenges linked to: the aim and rationale
of health care transition; offers an introduction to complex health conditions; situates the
complexity of chronic conditions in clinical practice and patient experience discourse; and
discusses the role of primary health care in transition and ongoing care of young adults with
complex chronic conditions.
The transition to adulthood is a critical time for everyone to build independence,
experience new things, and become self-sufficient. Individuals with complex chronic
conditions withstand additional challenges as during this stage of life they also risk facing a
discontinuity of care (Roebroeck, Jahnsen, Carona, Kent, & Chamberlain, 2009). A complex
chronic condition is defined “as any medical condition that can reasonably be expected to
last at least 12 months and involves either several different organ systems or one organ
system severely enough to require specialty care, decision-making, or coordination”
(Goossens et al., 2016; National Quality Forum, 2012, p. 7). Health care transition is
recognised as a challenging process that involves facilitating appropriate levels of
independence and support for these young adults, with the goal of achieving optimal health
and quality of life (Child Health BC, 2018). Therefore, as these individuals mature to
adulthood, it is crucial that their clinical care remains comprehensive, coordinated and
uninterrupted.
The continuous advancement of pediatric health services and medical technology
have contributed to an increased life expectancy for children living with various complex
chronic conditions, enabling them to live much longer, into adulthood (Goossens et al., 2016;

2
Roebroeck et al., 2009). While advances in health care have provided breakthrough
treatments for patients, they also pose a new challenge in that an increased number of young
adults with complex chronic conditions transition from pediatric to adult-oriented care. Over
2,000 young adults with chronic and ongoing medical needs are discharged from pediatric
care each year in British Columbia (BC) (Child Health BC, 2018). Such increases in survival
rates into young adulthood have increased populations of adults living with complex chronic
health conditions by more than 60% over the past decade (Child Health BC, 2018).
As a result of increased survivorship the mapping and reporting of outcomes,
following transition, for young adults with complex conditions, is a developing area of
research (Zhou, Roberts, Dhaliwal, & Della, 2016). Literature has shown that many young
adults with complex chronic conditions do not receive adequate preparation or guidance to
help them successfully transition to adult-oriented services resulting in fragmented care and
poor health outcomes (Kuo, Ciccarelli, Sharma, & Lotstein, 2017; McManus, Fox,
O’Connor, Chapman, & MacKinnon, 2008; Paone & Whitehouse, 2011). Within the context
of the general BC population, 4.8 billion (Statistics Canada, 2018), the numbers of young
adults with complex chronic conditions, albeit small, is increasing. In light of emerging
evidence, it is recognized that these individuals are ill-equipped and underprepared for the
responsibilities and expectations of the adult health care system (Paone & Whitehouse, 2011;
Zhou et al., 2016).
Health care transition is a process that involves the movement of young adults with
chronic physical and medical conditions from pediatric to adult-oriented health services
(Blum et al., 1993; Fair et al., 2016). The need to provide transition care to adolescents and
young adults was recognized over three decades ago by Zhou et al., (2016), which highlights

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this is not a new phenomenon. However, transition remains a complex process that requires
early initiation, planning, coordination, and collaboration among multiple providers prior to
the final transfer of care (American Academy of Pediatrics [AAP], American Academy of
Family Physicians [AAFP], & American College of Physicians-American Society of Internal
Medicine [ACP-ASIM], 2002; Canadian Association of Pediatric Health Centres (CAPHC),
2017; Mubanga, Baumgardner, & Kram, 2017; Paone & Whitehouse, 2011). Furthermore,
this process is complicated by the physiological, cognitive and psychosocial changes or
maturation associated with adolescence development (Ozdemir, Utkualp, & Pallos, 2016). At
this stage of development, the adolescent appears as an adult, but may lack the capability of
thinking and behaving like an adult (Ozdemir et al., 2016). As such, key principles of health
care transition can be affected including assuming responsibility for current care, care
coordination, and future health care planning; increasing autonomy, personal responsibility,
and self-reliance; and acquiring self-management skills and condition-related knowledge
(CAPHC, 2017; Wang, McGrath, & Watts, 2010). In addition, at this stage of life, these
individuals are just as likely or more likely, to engage in risky behaviours such as
unprotected sexual activity and experimenting with tobacco, alcohol, and illicit drug use as
compared to those without chronic health conditions (CAPHC, 2017). Therefore, throughout
adolescence youth with complex chronic conditions are more vulnerable to a range of health
care difficulties including; lapses in care, increased emergency room visits, and recurrent
hospitalizations which ultimately can lead to disengagement in health seeking behaviour and
access with health care services (Vaks et al., 2016).
Transition clinics, programs, and clinical fellowships exist in Canada for specific
chronic conditions such as diabetes and cystic fibrosis (Gravelle, Paone, Davidson, &

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Chilvers, 2015; Oswald et al., 2013; SickKids, 2014a). These initiatives have developed a
robust transition process in some provinces and geographical areas, improving care
efficiency for health care providers and transition outcomes for individuals with diseasespecific conditions (Gravelle et al., 2015; Viner, 1999). However, for adolescents
transitioning into young adulthood with co-morbidities such services can be absent or
fragmented (Viner, 1999), with little or no inclusion of the primary care provider (Scal,
2002) who by this stage has become their main health care connection. Regular provider
contact and health promotion education are critical at this stage of life as evidence confirms
that young adults with complex chronic conditions are more likely to be less adherent to
medications and attend follow-up appointments after the transfer of care, impeding the
management of their condition and placing their health at risk (CAPHC, 2017; Vaks et al.,
2016).
In my practice as a registered pediatric nurse at BC Children’s Hospital (BCCH), I
have witnessed first-hand the impact that the health care transition process has on the family,
young adult, and health care team. I have spent time working in the hospital’s pediatric
nephrology and oncology outpatient clinics, where patients were well supported and prepared
for their transition. However, transition care for children with especially rare or more
complex chronic conditions such as metabolic disorders, spina bifida, cerebral palsy or those
born with chronic health issues due to significant prematurity continue to be fragmented or
absent. These populations have no standard transition process and experience delayed
transition or haphazard care, placing added stress on the patient, family, and health care
providers. Challenges exist on both sides i.e. providing and accessing/receiving care, since
professionals with pediatric training can feel ill-equipped preparing and meeting young adult

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goals while the young adult experiences barriers to accessing and engaging with a health
system that cannot support their unique health and wellbeing needs.
Understanding the individual experience, as well as that of their caregiver, is critical
in examining the process of transition. A significant body of literature identifies the lived
experience of young adults with complex chronic conditions transitioning into adult-oriented
care. Such studies examine the psychosocial factors that influence the transition process
(Birnkrant et al., 2018; Blum, 1995; CAPHC, 2017; Kaufman, Pinzon, & CPS, 2018; Paone
& Whitehouse, 2011; Reiss, 2012; Wong et al., 2010), and the general benefits of continuous
care within this population (CAPHC, 2017; Goossens et al., 2016; Paone & Whitehouse,
2011). However, few studies focus on bringing these bodies of evidence together to address
how practitioners can best incorporate this information across the scope of clinical practice
(AAP, AAFP, & ACP-ASIM, 2011; Bhawra, Toulany, Cohen, Hepburn, & Guttmana, 2016;
CAPHC, 2017; Kuo et al., 2018; Mubanga et al., 2017; Vaks et al., 2016). While specialist
providers may have had greater capacity to shift transition services in light of evidence
(Potosky et al., 2011; Scal, 2002) often, the primary provider is a minor contributor or absent
from studies (Scal, 2002). Within BC the health delivery model recognizes that the primary
care provider is both the entry point into the health system and the central hub for
coordinating care, therefore, it is vital that primary care providers have an evidence-informed
approach to addressing barriers associated to health care transition for this population.
Further, within the scope of primary care practice, primary care providers such as family
nurse practitioners, are responsible for managing routine health surveillance, screening and
long-term follow-up for individuals across their lifespan (BCCNP, 2018b; Meacham et al.,
2012). As such, I believe that family nurse practitioners within a multidisciplinary setting are

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in an ideal position to support young adults with complex chronic conditions undergoing
health care transition as they are able to provide a sense of consistency and familiarity during
times of vulnerability, i.e. transition.
The purpose of this paper is to conduct an integrative literature review in order to
answer the following question: “What are the strategies primary care providers can use to
enhance the transition process for young adults ages 15-25 years with complex chronic
conditions exiting pediatric services?” The following sections of this paper will provide an
overview of concepts and background information on young adults and complex chronic
conditions. Then, in order to relate the issue to practice in BC, an explanation on how the
health care transition process for young adults with complex chronic conditions is currently
being managed within the province will be provided, along with an explanation of the
different roles of each provider involved. Importantly, barriers and facilitators towards health
care transition will be explored. This will be followed by Chapter 3, which will outline the
methods used for the integrative literature search, including a table summarizing the search
process. Next, the findings of the literature search will be presented and analyzed in Chapter
4, followed by a discussion of their significance and relevance to primary care providers in
Chapter 5. Finally, the limitations of this paper will be discussed and areas for further
research and future practice considerations will be addressed.

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Chapter II: Background and Context
Complex chronic conditions come with extraordinary physical, emotional, societal,
and financial challenges (AAP, AAFP, & ACP-ASIM, 2002; Mubanga et al., 2017; Paone &
Whitehouse, 2011). As more children with complex chronic conditions survive into
adulthood, health care providers face the challenges of determining how and when to best
prepare these individuals for transitioning into the adult health care system. The prevalence
(i.e. epidemiology, impact and risk), complexity, context, barriers, and impact of transition
for providers and individuals are explored in the following chapter. Parallels are drawn
between ‘complex chronic conditions’ and ‘chronic conditions’ since specific
epidemiological data linked to complexity is absent. Finally, this chapter illuminates the
complexity of multidisciplinary care and explores the role of the nurse practitioners within
the context of primary care as proponents to transitional care.
Epidemiology, Impact, and Risk Factors
In Canada, approximately 140,000 children and young adults have a physical or
intellectual disability and a staggering 77% of these children have three or more disabilities
(Health Canada, 2007). Among this population of children, 117,510 of the disabilities are
chronic impacting the young individual’s health and development long-term (Health Canada,
2007). Further, there are approximately 30,000 premature births in Canada per year
(Statistics Canada, 2016). Studies have shown that infants born before 37 weeks of
pregnancy are at higher risk of developing various chronic health conditions as a result of
chronic lung disease, cardiovascular disorders, and congenital anomalies (HealthLink BC,
2017; Statistics Canada, 2016). Despite increased health risks, premature infants in Canada
continue to have a high survival rate (HealthLink BC, 2017). For example, it is estimated that

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eight out of ten infants born at 25 weeks of pregnancy and five out of ten infants born at 24
weeks of pregnancy are now expected to survive into adulthood (HealthLink BC, 2017). The
extent of complex chronic health needs, however, is difficult to determine. Evidence
indicates that approximately four out of ten premature infants weighing less than two pounds
at birth are likely to have one or more moderate to severe health condition by the age of eight
years (HealthLink BC, 2017).
Overall, it is estimated that 20% of young Canadians and their families are affected
by chronic conditions and disability requiring access to and utilization of extensive health
care services over their life time (Health Canada, 2009; Okumura et al., 2010). These
statistics only account for a small number of the many chronic conditions affecting children
in Canada. Both congenital anomalies and childhood chronic conditions are associated with
increased morbidity and mortality, as well as increased risk for subsequent adult-onset
chronic disease (WHO, 2005).
In addition to these health effects, chronic conditions have social and financial
burdens on the affected individual and their families, and place added costs on society in
regards to education and health care services (Health Canada, 2009). Individuals with
chronic conditions are often dependent on medical equipment and require ongoing
emotional, physical, and financial assistance throughout their lifetime. For example,
individuals with spinal muscular atrophy, who have limited mobility and respiratory
function, may be wheelchair and ventilator dependent requiring 24-hour assistance from
family or caregivers (McLaughlin et al., 2014). Moreover, evidence reports a correlation
between poverty and chronic illness (Health Canada, 2009; WHO, 2018). Canadian statistics
report that family incomes of those with chronically ill children average one-third less than

9
that of families of an equivalent size with healthy children (Health Canada, 2009).
Individuals with lower socioeconomic status are much more vulnerable to chronic conditions
due to greater exposure to risks, decreased access to health services, and increased
psychosocial stress (WHO, 2005). These data highlight the prevalence of chronic conditions
among young Canadians and their families, as well as the significant impact they have on an
individual’s overall wellbeing. The care required for this population is often complex and
burdensome, involving ongoing physical and emotional support of their parents or
caregivers, as well as the support and care of the Canadian health system (Paone &
Whitehouse, 2011).
Complex Chronic Conditions
As the epidemiology of childhood chronic conditions have changed, young adults
with complex chronic conditions have emerged as a special interest for health care delivery
(Goossens et al., 2016; Scal, 2002). Individuals with complex chronic conditions withstand
similar challenges to those with chronic conditions. Since these conditions affect more than
one bodily system, individual’s often experience motor, sensory, communicative, or
intellectual impairments and may have complex limitations in self-care functions (Raina,
O’Donnell, Rosenbaum, & Wood, 2005). Due to their multifaceted health care needs, these
individuals require extensive care teams that collaborate and work together alongside the
patient and their family.
Children and adolescents with suspected complex chronic conditions in BC are
referred to a pediatrician by their primary care provider within the community and then
further referred for pediatric subspecialty care at BCCH or other pediatric clinics throughout
the province (Provincial Health Services Authority [PHSA], 2018a; BCPS, n.d.; Paone &

10
Whitehouse, 2011). The pediatric multidisciplinary team caring for these children generally
consist of physicians, nurse practitioners, nurses, social workers, dieticians, psychologists,
physical therapists and occupational therapists (PHSA, 2018a). Together this team becomes a
significant support system for these patients and their families. Unfortunately, once young
adults are discharge from pediatric services, care becomes increasingly more challenging
because the adult health system does not have access to the same resources as pediatric
services (Paone & Whitehouse, 2011). Additionally, the complexity associated with
managing multiple issues can be overwhelming for adult-oriented providers who may lack
experience and education caring for this population (Mubanga et al., 2017; Paone &
Whitehouse, 2011)
At present, the most common complex chronic conditions seen in pediatric care are
cardiovascular, congenital, neuromuscular, respiratory, and oncological (Goossens et al.,
2016). For many years, infants born with such conditions rarely reached the age of majority.
Now, with early interventions and rapid advancements in medical technology, individuals
with complex chronic conditions are living into adulthood. For instance, every year over 120
children are born in Canada with spina bifida (CanChild, 2018). This condition, like many
other complex chronic conditions, was historically recognized as a pediatric illness.
However, over the last decade, the life expectancy has significantly increased from early
childhood to mid-thirties (CanChild, 2018; Paone & Whitehouse, 2011; Squiers,
Lutenbacher, Kaufman, & Karp, 2017). Additionally, 53% of men with muscular dystrophy
are now living in to their thirties and beyond (Birnkrant et al., 2018; Paone & Whitehouse,
2011). With this recent increased survival rate, it is perhaps not surprising that questions are

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arising in terms of ‘how to’ best support and medically care for these young adults with
complex chronic conditions as they transition into adulthood.
Health Care Transition in BC
From birth until adolescence individuals with complex chronic conditions are cared
for in a holistic manner under multidisciplinary pediatric services, where both their physical
and emotional needs are addressed using a patient and family centered approach (ZhangJiang & Gorter, 2018). However, national pediatric health care regulations in most countries
do not allow continued access to pediatric care once patients reach the age of 16 years
(Rutishauser, Sawyer, & Ambresin, 2014), in BC this age is slightly higher at 17 years for
inpatient care and 19 years for outpatient care (PHSA, 2018b; BCPS, n. d.). Therefore, as an
increasing number of individuals with complex chronic conditions live longer, increasing
number of young adults with complex conditions are exiting pediatric services. In 2006 a
total of 790 young adults transitioned from BCCH to adult-oriented care, this number
increased in 2011 by 64% and it is now estimated that approximately 2000 young adults will
continue to transfer annually (Child Health BC, 2018; Paone & Whitehouse, 2011).
Evidence suggests young adults with complex chronic conditions face greater
challenges during the health care transition process (AAP, AAFP, & ACP-ASIM, 2002;
Squiers et al., 2017). As such, patients may forgo regular care once they are discharged from
pediatric services, ultimately resulting in a decline in health and reduced quality of life as
they age (Campbell et al., 2016; Okumura, Hersh, Hilton, & Loststein, 2013; Squiers et al.,
2017; Viner, 19999). The exact age of transfer to adult-oriented services has always been at
question (Zhou et al., 2016). Late transfer can result in poor patient outcomes (Zhou et al.,
2016), while others argue that early transfer could be associated with increased risk of

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psychosocial issues (Helgeson et al., 2013). It is understood that the age of transfer should be
individualized to the patient and that optimal health care is achieved when they receive
medically and developmentally appropriate care (AAP, AAFP, & ACP-ASIM, 2011; Paone
& Whitehouse, 2011).
While there is no set definition of what constitutes successful health care transition
for this population, it is well recognized that identifying the needs and goals of these young
adults prior to exiting pediatric services is essential for maintaining positive health outcomes
and improved quality of life (Ferris et al., 2015). The overarching goal is to maximize
lifelong functioning and well-being for all young adults, whether they have a complex
chronic condition or not (AAP, AAFP, & ACP-ASIM, 2011). Attributes of effective
transitions include flexible, individualized, and continuous clinical care managed by health
care providers who have a thorough understanding of the patient’s unique medical and
psychosocial needs (Blum et al., 1993; Bloom et al., 2012; Paone & Whitehouse, 2011). This
process further includes self-management education, goal-setting, an assessment of the
patient’s readiness for transition, and a concise and complete discharge summary prior to
transfer (AAP, AAFP, & ACP-ASIM, 2011; Bloom et al., 2012; Hergenroeder et al., 2015;
Paone & Whitehouse, 2011). Specifically, a comprehensive and systematic process is needed
that begins in pediatric care to help patients and their families learn the appropriate skills and
knowledge necessary to independently manage their condition within a new health system
(Paone & Whitehouse, 2011).
A number of guidelines and tools are available to assist health care providers with
initiating transition care and support, when to assess patient’s readiness for transition i.e. ON
TRAC2, Got Transition, Bright Futures, and Good 2 Go (AAP, 2018; Mahan, Betz,

13
Okumura, & Ferris, 2017; PHSA, 2018a; SickKids, 2014b; The National Alliance to
Advance Adolescent Health, 2018). This being said, evidence states that only a small portion
of young adults with complex chronic conditions are receiving adequate transition support,
and that both pediatric and adult providers feel unprepared to address transition issues with
their patients (Bhawra et al., 2016; Davis, Brown, Taylor, Epstein, & McPheeters, 2014;
Hergenroeder, Constance, Wiemann, & Cohen, 2015; Kuo et al., 2018).
In BC, within current health care models children with complex chronic conditions
are managed by a pediatrician or shared between a pediatrician and primary care provider.
As such, transition care is typically initiated by the pediatrician who, due to the young
person’s complex health history, has had more regular direct contact with their care. This
provider then collaborates with the necessary pediatric subspecialists to gather collateral and
prepare transfer documents (Paone & Whitehouse, 2011). This process can be challenging
and is time consuming as it involves coordinating and collaborating with multiple providers
situated in pediatric organizations and adult settings. Nonetheless, it can be common practice
within some contexts for pediatricians to place the responsibility of transition over to the
adolescent’s primary care provider (BC Medical Association [BCMA], 2012). Difficulties
arise for primary care providers when they have had limited contact with the patient and
family since referral to either the pediatrician or pediatric subspecialty services (Scal, 2002).
This disengagement between patient and primary provider adds to the complexities of the
situation since the needs of the young person are limited to the provider sharing information
with adult services (BCMA, 2012). Despite these challenges, the transfer of care continues to
be essential for these young adults as pediatricians and pediatric subspecialists are not

14
equipped to continue providing the necessary health screening or routine medical care that is
needed for these patients as they mature in to adulthood (Mubanga et al., 2017).
While evidence supports that transition is the best way to provide continuous,
holistic, and comprehensive care to this growing population, there continues to be many
barriers which hinder the overall process.
Barriers in Health Care Transition
Barriers to accessing quality and evidence-informed transition programs at the
medical provider level are only a part of the difficulties young adults with complex chronic
conditions face. As an emerging population, the unique social and health needs of this
population continue to be poorly understood by both pediatric and adult-oriented providers.
Young adults have to begin to learn to navigate new systems and need guidance on how to
achieve this with confidence and certainty (Kaufman et al., 2018; Reiss, 2012; Squiers et al.,
2017). Furthermore, all providers included in the young adult’s care need to have a clear
understanding of their role, accountability, and responsibility to communicate with the young
person as well as their care coordinator. This is critical because the care coordinator, as part
of the transition process, has shifted from the pediatrician to the primary care provider, which
results in role uncertainty for everyone involved (AAP, AAFP, & ACP-ASIM, 2011; Paone
& Whitehouse, 2011). Additionally, these issues are exacerbated by the major differences
between pediatric and adult-oriented health care systems. In learning to navigate the
complexity of new relationships, the skills required by young adults with complex needs are
informed by their prior experiences. It is at this point that the variation between pediatric and
adult service provision is most noticeable. Moreover, these variations between service

15
provision are further impacted by the lack of communication between health care providers
and care settings.
Pediatric to adult health care systems. Several differences between pediatric and
adult health care systems exist because of the philosophy of the organizations and the
professionals focus working in these settings (Kaufman et al., 2018; Kirk, 2008; Paone &
Whitehouse, 2011). Many young adults have reported that during transition these differences
were dramatic and daunting (Campbell et al., 2016; Kirk, 2008). Firstly, the focus of care
changes from patient and family centered which includes parental involvement in decision
making, to strictly patient centered requiring autonomous, independent skills of the young
adult (BCMA, 2012; Kaufman et al., 2018). This change of approach can be challenging and
anxiety provoking for the young adult, their family, and their pediatric providers (Kirk, 2008;
Zhou et al., 2016). Pediatric providers may question adult-oriented provider’s expertise in
childhood conditions and therefore have difficulty letting go of their long-term patients in
fear of their health declining (Bloom et al., 2012; Mubanga et al., 2017; Nehring, Betz, &
Lobo, 2015; Zhou et al., 2016). Similarly, added stress is placed on adult-oriented providers
receiving these patients into their practice as more often than not the young adults lack
knowledge about their own condition and are unprepared or unable to take on the
responsibility of autonomous decision making (CAPHC, 2017; Kaufman et al., 2018;
Mubanga et al., 2017). Secondly, the pediatric multidisciplinary approach to care that
promotes collaboration among providers changes to adult providers who generally work
independently and separately from one another (Paone & Whitehouse, 2011). This places the
young adults care management at risk of becoming fragmented and uncoordinated among all
necessary providers. Thirdly, essential services such as respite care, insurance, and

16
community supports are greatly reduced and more difficult to access or absent within the
adult health care system resulting in increased family fatigue and financial strains (Bloom et
al., 2012; Kaufman et al., 2018; Paone & Whitehouse, 2011). Such differences between the
mandate and function of pediatric to adult health systems impact the young adult, their
families, and health care providers during the entire transition process. Evidence has shown
that while these three factors can each play a major role in transition, failure to address such
concerns results in disengagement with secondary care providers in adulthood (Kaufman et
al., 2018). The differences between pediatric and adult health care systems in BC that
influence health outcomes for young adults with complex chronic conditions before, during,
and after health care transition are summarized in Table 1, below.

17
Table 1
Differences Between Pediatric and Adult Health Care Systems in British Columbia
Pediatric Health Care System
Family centered care
Parent or guardian promotes, prompts, and
encourages care and medication
management to safeguard adherence and
has a strong advocacy role.
Parent or guardian attends medical
appointments alongside patient. Legal
implications linked to consent and decision
making capacity.
Multidisciplinary approach by a range of
health care providers.

Adult Health Care System
Patient centered care
Patient is assumed and often expected to be
knowledgeable about their condition and
direct their own care.

Attending medical appointments
independent from family or guardian is
strongly recommended and actively
encouraged.
Referral process to adult specialists and
other allied health professionals as needed.
Majority of providers work independently
and separately from one another.
Family insurance coverage
Independent insurance services
Subspecialists with wealth of knowledge
Health care providers lack experience and
around rare complex conditions
knowledge with childhood complex
conditions due to limited numbers of
patients with such complexity
Developmentally appropriate care that
Lack of experience providing young adult
focuses on all aspects of wellbeing.
friendly care. Medically focussed, goal is to
reduce risks of long term complications.
Note. Table adapted from Paone and Whitehouse (2011) ONTRAC summary report on
developing a transition initiative for youth and young adults with chronic health conditions
and /or special needs in B.C.
Adult-oriented services. In addition to the differences between pediatric and adult
health care systems, other barriers stem from hesitation by adult-oriented providers on the
receiving end of the transfer largely due to issues around education and experience (Kuo et
al., 2018; Mubanga et al., 2017; Okumura et al., 2010). At present there is a lack of training
in congenital and childhood conditions for adult-oriented providers, as well as a lack of time
and reimbursement for the extra hours needed to successfully coordinate care (AAP, AAFP,
& ACP-ASIM, 2011; Betz, 2004; Hergenroeder et al., 2015; Kuo et al., 2018; Mubanga et
al., 2017). Further, adolescence itself is a transitional stage of physical and psychological

18
maturity including the development of adult behaviors (CPS, 2003; Paone & Whitehouse,
2011). As such, this point in time represents a window of opportunity to promote healthy
behaviours (Campbell et al., 2016; Paone, Wigle, & Saewyc, 2006) and developmentally
appropriate health education areas in which adult-oriented providers may not be confident in
leading discussions (Bloom et al., 2012). For these reasons, it is challenging for pediatric
providers to find appropriate adult specialists that are both experienced in their patient’s area
of specialized care and willing to take on new patients (AAP, AAFP, & ACP-ASIM, 2011;
Mubanga et al., 2017), therefore further delaying the transition process and transfer of care.
Information exchange and communication. Among the common barriers to
effective health care transitions are the challenges with patient information sharing and
communication between health care providers and care settings. While collaboration across
care settings and direct communication between providers is fundamental for providing
comprehensive care to complex patients, studies have identified that this is time consuming
and, at times, near impossible (Coleman & Berenson, 2004; Loeb, Bayliss, Candrian,
deGruy, & Binswanger, 2016). This is largely due to inadequate systems for delivering
information reliably between providers, as well as the general challenges around connecting
with busy specialists (Mahan et al., 2017). Health care systems vary widely in their resources
and ability to implement transition-related interventions such as standard transition policies
and electronic health systems (Ferris, Ferris, Okumura, Cohen, & Hooper, 2015; Mahan et
al., 2017). There is no universal electronic health record (EHR) system with connectivity
across care settings (Coleman & Berenson, 2004). For example, larger, integrated health
facilities have EHR systems and access to multiple subspecialists who can easily
communicate within a single system and are able to readily access customary transition tools

19
through their EHR system (Mahan et al., 2017). This allows for improved collaboration and
communication between services as all providers have timely access to the patient’s medical
records (Coleman & Berenson, 2004). Meanwhile, smaller facilities such as primary care
clinics and those in rural or remote areas, do not always have access to such EHR systems,
especially systems with connectivity beyond the clinic or office, resulting in limited
coordination among services and less reliable methods for transferring and accessing patient
medical information (Campbell et al., 2016; Ferris et al., 2015; Loeb et al., 2016).
Similarly, there is a lack of direct one-on-one communication between pediatric and
adult providers during the health care transition process, further enhancing the potential for
redundancies or lapses in care (Hergenroeder et al., 2015; Looman et al., 2013; Mubanga et
al., 2017). Health care transition is a continuum that requires communication, collaboration,
and coordination between well-trained primary care providers and specialists in both
pediatric and adult-oriented services, even after young adults have transferred (Mahan et al.,
2017; Paone et al., 2006). Thus, this general lack in communication is critical to note as care
can be compromised if patient information is not transferred in a timely manner as the
patient’s medical file must be recreated or updated with the potential for errors (BCMA,
2012; Coleman & Berenson, 2013). Moreover, the quality of care delivery may also be
affected when primary care providers or adult specialists are unable to readily consult with
prior pediatric providers or subspecialists for support (Okumura et al., 2010), placing the
health and safety of the young adult at risk.
Health Care Transition and Primary Health Care
Historically, the majority of programs developed to enhance health care transition for
this population have been disease-specific or subspecialty-specific and based within tertiary

20
services with very little focus on primary health care (Bhawra et al., 2016). It is debated
whether transition care should be the responsibility of specialists in an outpatient setting or
primary care providers within the community. Although specialists are best suited to create
and update condition-specific needs for transition care (Potosky et al., 2011), evidence states
that primary care providers should take on greater responsibility in order to optimize medical
care and address the psychosocial aspects associated to these young adults (Paone &
Whitehouse, 2011; Potosky et al., 2011; Scal, 2002).
Primary health care refers to health services that focus on protecting and promoting
the health of individuals within a community setting. It is often the entry point to the health
care system and provides comprehensive, accessible, community-based care for individuals
throughout their life (BCCNP, 2018a). Traditional primary health care models have been
scrutinized for being too medically focused and provider driven (CNA, 2015). However, in
order to meet the increasing needs of patients, primary health care services have evolved to
focus on effective team-based care that is multidisciplinary and patient-centered.
Multidisciplinary working is defined as a group of individuals with varied but complimentary
experience, qualifications, and skills that work together to achieve a mutual goal (Mitchell et
al., 2008). In the context of a complex health care system, an effective multidisciplinary
team-based (MDT) approach to care is crucial for ensuring patient safety. Delineation of
roles and responsibilities in the MDT can limit miscommunication which reduces patient risk
(Babiker et al., 2014). This model of care is being utilized throughout BC with a recent
announcement by the provincial government for greater expansion and integration over the
next three years (Province of BC, 2018). The goal for this redevelopment is to improve
access to and coordination of care, and to support patients and their families by providing

21
comprehensive longitudinal health services (BCCNP, 2018b). In BC, a large portion of
primary care providers such as family physicians and nurse practitioners work in MDT
models of care. The following section will provide details around the nurse practitioner role
within a multidisciplinary setting.
The nurse practitioner role has been recognized as a valuable addition to health care
reform. Fueled by an increased demand in care and a decrease in resources (Battle Haugh &
Mildon, 2008), an enhanced interest and political will to move away from the medical model
of health to a more holistic and upstream approach has become a priority. This has generated
the support for primary health care reform and ultimately led to the integration of nurse
practitioners in Canada (Archibald & Fraser, 2012;). Nurse practitioners are health care
professionals with a master’s level of education who can work independently, or
collaboratively with physicians and other health care professionals, to provide care
throughout an individual’s life (BCCNP, 2018b). This care includes diagnosing and treating
illnesses, ordering and interpreting tests, prescribing medications, making referrals,
consulting with medical specialists, and performing minor medical procedures as necessary
(BCCNP, 2018b). Separate from other practitioners, the emphasis of nurse practitioner
practice includes health promotion, disease prevention, and illness management (CNA,
2015). In BC, nurse practitioners work with patients of all ages in both acute and community
settings and are recognized as an essential member of health care teams. With a goal of
comprehensive, high-quality care and a focus on social determinants of health, nurse
practitioners appear to be an asset for co-managing transition care for young adults with
complex chronic conditions.

22
Aside from the complexities associated with these young adults’ health, the issue
surrounding transition care for this population is also intrinsically tied to psychosocial factors
that impede the transition process and further impact their wellbeing. Moreover, the primary
care setting is typically the central site for health promotion and longitudinal care.
Considering this, understanding and addressing the factors associated with health care
transition for young adults with complex chronic conditions aligns well with the purpose of
primary health care. For the remainder of this paper, the term primary care provider will be
used and will refer to both family physicians and family nurse practitioners.
In summary, transition planning, when present at all, can be inexplicit, incomplete, or
delayed, and when possible, the transfer of care to an adult-oriented provider and to adult
specialists involves more of a drift away from pediatric care rather than a clearly planned and
executed hand over. (AAP, AAFP, & ACP-ASIM, 2011). This background review aimed to
identify and describe the multifaceted and challenging nature of complex chronic conditions,
explore and understand the needs, organizational system influences, and impact of transition
for individuals, their families, and providers thereby resulting in the formulation of the
question “What are the strategies primary care providers can use to enhance the transition
process for young adults ages 15-25 years with complex chronic conditions exiting pediatric
services?”
The following chapter will describe the search methods conducted for this integrative
literature review that examine current practices and strategies to enhance the health care
transition process for young adults with complex chronic conditions exiting pediatric
services.

23
Chapter III: Methods
This chapter will proceed to discuss the integrative literature review and the search
strategies used in order to select the final studies chosen for analysis. An integrative literature
review was conducted in order to obtain a better understanding of the current practices
around health care transition for young adults with complex chronic conditions. Further, to
explore practice strategies that may be used by primary care providers to enhance the
transition process for this population. The topic under review was guided by the following
question: “What are the strategies primary care providers can use to enhance the transition
process for young adults ages 15-25 years with complex chronic conditions exiting pediatric
services?”
An integrative literature review is a specific review method that enables one to
synthesize literature from a variety of research methodologies including qualitative,
quantitative, and mixed-methods studies (Whittemore & Knafl, 2005). Integrative literature
reviews differ from other review methods as they combine data from both theoretical and
empirical sources in order to provide an enhanced understanding of the topic at issue
(Whittemore & Knafl, 2005). Therefore, an integrative literature review was selected since a
broad spectrum of research can then be synthesized and subsequently findings applied
toward clinical practice improvements, health policy changes, and evidence informed
practice initiatives (Whittemore & Knafl, 2005). It is important in integrative literature
reviews to use explicit and systematic methods. As a result, Whittemore and Knafl (2005)
propose a five stage framework to enhance rigour within these reviews.
Whittemore and Knafl’s (2005) methodological framework involves the following
five stages: 1) problem identifications, 2) literature search, 3) data evaluation, 4) data

24
analysis, and 5) presentation. The background section outlines the clinical challenges;
increasing survivorship of young adults with complex chronic conditions exiting pediatric
services requires primary care providers to be knowledgeable of and skilled in the transition
process thereby assisting young adults to access and utilize adult health care services. This
chapter will address the second, third, and fourth stages of Whittemore and Knafl’s approach
to the integrative literature review. The following chapters will then present the fifth and
final stage.
Literature Search
A well-defined search strategy is essential in integrative literature reviews
(Whittemore & Knafl, 2005). Further, Whittemore and Knafl (2005) recommend a
comprehensive search using at least two or three strategies and all decisions should be made
explicit. Therefore, the literature search was conducted in three stages; stages one and two
were to search material via electronic databases, and stage three was to identify literature
through hand searching, reviewing grey literature, and networking approaches. The
electronic databases searched were Cumulative Index of Nursing and Allied Health
Literature (CINAHL), MEDLINE, PsychINFO, and Joanna Briggs Institute. These databases
were chosen for their extensive inclusion of health care and psychological journals. Next, in
order to guide the literature search, a clear inclusion and exclusion criteria were created that
were specific to the aim of this project. The criteria were informed by the background
reading and selected in order to ensure a wide range of the literature was identified, while
maintaining a focus that is also relevant and current. Attention to inclusion and exclusion
criteria took precedence throughout all stages of the literature search and duplicate or

25
unrelated articles were eliminated. The following section of this chapter further discusses the
literature search process conducted for this paper.
Inclusion and exclusion criteria. The literature search for this topic was conducted
to identify sources that addressed strategies that primary care providers can use to enhance
the health care transition process for young adults with complex chronic conditions exiting
pediatric services. Research on health care transition has become an increasingly popular
topic over the past decade, as such, for the initial search of the databases, dates were set from
2007-2017. Due to the high volume of results after the initial search, dates were changed to
include material published only between 2012 and 2017. This helped to narrow down the
search and capture the most current information, whilst maintaining a broad understanding of
the evolution of this topic. Eligible studies had to be published, written in the English
language and conducted within the United States, Australia, or Western Europe, as these
health care systems are similar to Canada. Any findings conducted outside of these areas
were not included in the final results.
Both male and female participants were included between the ages of 15-25 years
that were in the process of or had already transitioned from pediatric to adult-oriented care
and required ongoing clinical support. Studies were excluded if they addressed only
educational or vocational service transitions and outcomes, rather than health care. All
participants had to have a complex chronic condition, as defined in the glossary of terms
provided at the beginning of this paper, such as multimorbidity, congenital anomalies,
cerebral palsy, muscular dystrophy, or spina bifida. Multimorbidity was defined as,
“…having two or more concurrent chronic conditions that collectively have an adverse effect
on health status, function, or quality of life that require complex health care management,

26
decision-making, or coordination” (Nation Quality Forum, 2012, p. 7). Any literature that
specifically identified asthma, diabetes, cardiac, and/or oncology conditions individually
were excluded. Studies were not included if participant characteristics or medical conditions
were unclear or not discussed in studies. Studies were excluded if they focused primarily on
individuals with cognitive impairment as such conditions require additional interventions and
supports during the transition process associated to guardianship, medical decision-making
and health management which exceed the limits of this paper.
Studies that addressed provider, patient, or patient and family perceptions of health
care transition were included. Any studies that only discussed family member’s perceptions
were removed. Lastly, any type of supportive intervention that was specifically directed
towards the transitional process between pediatric and adult health services for patients with
complex chronic conditions were included. Studies specific to the use of multidisciplinary
teams, nurse practitioners, and primary health care were of high priority. Inclusion and
exclusion criteria are summarized in Table 2, below.

27
Table 2
Inclusion and Exclusion Criteria
Inclusion
Years of publication: 2012- 2017
Ages 15- 25 years
In the process or has already transitioned
Chronic non-specific conditions, complex
conditions, or multimorbidity
Patients who may require physical
assistance, but are able to make decisions
independently
Health care provider, patient and family, or
patient-only perceptions
Conducted within North America, Western
Europe, Australia, and New Zealand
Published reports
Publication language: English
Studies examining health care transition for
young adults with complex chronic
conditions
Studies that discuss: health care transition
strategies, primary health care, specialists to
primary care provider, nurse practitioners,
care coordination, multidisciplinary teams

Exclusion
Publications older than 5 years
<15 years or >25 years
Not in the transitional process yet
Articles that include only common
conditions; diabetes, cystic fibrosis, asthma,
cardiac, and/or mental health
Articles only discussing patients who are
cognitively impaired
Articles only discussing family members
perceptions
Conducted outside of inclusive countries
Unwritten materials
Non-translated reports

Stage one: Searching electronic databases. Stage one of the literature search was
conducted using multiple resources. Search terms were obtained through key terms and
concepts derived from the research question and topic of this paper. The PIO; population,
intervention, and outcome, format was used to create the initial question and determine the
aim for the search strategy. The PIO format was effective in identifying the key terms to be
included in the literature search and applicable for developing search criteria with more
detail (Grove, Burns, & Gray, 2013). Next, a concept map was developed to help broaden the
search and generate more key words by using parallel terms. The final key terms used were:
transition of care, health care transition, young adults, adolescents, multimorbidity, multiple

28
chronic conditions, continuity of patient care, care coordination, primary health care, nurse
practitioner, primary care provider, and family physician. Boolean operators, ‘OR’ and
‘AND’, were used to combine key terms and link relationships between concepts while
searching the databases. Using the ‘OR’ operator helped to expand the search compared to
searching terms individually, while the ‘AND’ operator combined terms to narrow the results
and gather more specific findings. The total number of studies found during the initial search
was 7,344. Appendix A depicts the key terms used, the searches conducted, and the number
of results obtained from each.
Inclusion and exclusion criteria were applied to the initial literature search results and
any duplicate studies were eliminated. The titles of the studies were then scanned for
relevancy based on the key terms. Any studies that did not contain the appropriate terms or
relevant subjects were eliminated. 6,827 studies were eliminated at this stage, leaving 517
remaining articles for further evaluation.
Stage two: Screening abstracts and in-depth review. Stage two of the search
strategy included filtering through the remaining studies from the electronic database
searches by rescreening titles and reviewing the abstracts. This eliminated 319 studies,
resulting in 198 studies for final review. The 198 final studies were then examined for
relevance by re-reading abstracts and by scanning whole papers to assess the quality of the
evidence and relevance to the research question. At this point in time, among the 198 final
studies, two systematic reviews (Betz, Lobo, Nehring, & Bui, 2013; Gabriel, McManus,
Rogers, & White, 2017) were noted to include one study from Japan and one study from
Hong Kong in their analysis. Despite these countries being outside of the inclusion and
exclusion criteria of this integrative literature review, I chose to keep both reviews due to

29
their high relevance to the research question. This process resulted in the elimination of 187
studies, and the selection of 11 applicable studies.
Stage Three: Hand searching, grey literature and networking. At this point,
reference lists of the remaining 11 studies were scanned for seminal studies to ensure data
saturation. The screening process as well as inclusion and exclusion criteria that were used in
stages one and two were also applied to any articles located from the reference lists. After the
screening process, one study was kept from hand searching resulting in a total of 12 studies.
This search, along with stages one and two, are demonstrated through a flow diagram in
Appendix B.
To find grey literature that was applicable to this topic, a Google search was
conducted using key terms: health care transition and young adults and complex chronic
conditions. This search identified the following websites: BC Medical Association, SickKids
“Good 2 Go” Transition Program, BCCH “ONTRAC” Transition Program, The Canadian
Association of Paediatric Health Centres, and The American Academy of Pediatrics. From
these websites, five reports were found. Two of these reports were older than 2012 and three
did not include relevant information around strategies for primary care providers, therefore,
these sources were used for the background and context of this paper.
Finally, Ciara McGeough, senior practice leader for Youth Transitions and
Ambulatory Care Services at BCCH, was contacted by email and phone for further collateral
around current transition practices in BC. One article was recommended by Ciara McGeough
and used in the background section of this paper. The search strategy for grey literature and
networking approaches are depicted by a second flow diagram in Appendix B.

30
In total, 12 published pieces of work were included in this integrative literature
review and include: 3 systematic reviews and 9 primary studies. All searches were conducted
between September 2017 and February 2018.
Data Evaluation
In the data evaluation stage, Whittemore and Kafl (2005) suggest assigning quality
scores to each article and that if two types of studies are included, two frameworks for
evaluating quality may be used. As such, the literature collected for this review was assessed
for methodological rigor, validity, and strength of evidence utilizing quality criteria
instruments. The textbook by Hoffman, Bennett, and Del Mar (2013) was used to assess each
articles level of evidence (see Appendix C). While, depending on the study, the Critical
Appraisal Skills Programme (CASP) systematic review checklist (2018), the CASP (2018)
qualitative checklist (see Appendix D), and the Maryland Scientific Methods Scale
(Madaleno & Waights, n.d.) (see Appendix E) were applied to guide the critical appraisal
process. The quality scoring of each article is located in the literature matrix in Appendix F.
Data Analysis
In the data analysis stage, information is “ordered, coded, categorized, and
summarized” to come to a conclusion (Whittemore & Knafl, 2005, p. 550). This stage of the
integrative literature review involved critically analyzing each of the final 12 studies by
creating a literature review matrix (see Appendix F). Headings of each column within the
literature review matrix included author, title, study aim, study design, quality and reliability
scores, relevant findings, and limitations and implications for future research of each study.
This approach provided a clear and organized lay out of extracted data, which were then
compared and grouped into four common themes: relationships, fear and anxiety,

31
preparedness, and communication and collaboration. Further analysis of these themes and the
results are discussed in the following chapter, Findings.

32
Chapter IV: Findings
The purpose of this integrative literature review was to collect and critically examine
current data on health care transition and primary care management within the context of
young adults with complex chronic conditions exiting out of pediatric services. The analysis
was guided by the following research question: “What are the strategies primary care
providers can use to enhance the transition process for young adults ages 15-25 years with
complex chronic conditions exiting pediatric services?” The search methodology described
in chapter two resulted in a total of 12 studies. These final studies met the inclusion criteria,
were evaluated using CASP (2018) tools and quality metrics and are subsequently further
analyzed and reported in this chapter.
Broadly, the studies comprised of a range of methodologies. Four of the 12 studies
are methodologically characterized as qualitative studies. More specifically these were
grounded theory (Aldiss et al., 2015; Okumura, Saunders, & Rehm, 2015) and descriptive
(Berens & Peacock, 2014; Syverson, McCarter, He, D’Angelo, & Tuchman, 2016)
methodologies to generate data. From the remaining eight studies, five were quantitative
using a range of approaches; time-series (Ciccarelli, Brown, Gladstone, Woodward, &
Swigonski, 2014; McManus et al., 2014), cross-sectional (Rutishauser, Sawyer, & Ambresin,
2014), and surveys (Chung, Jasien, & Maslow, 2017; Maddux, Ricks, & Bass, 2015). Three
systematic reviews completed between 1995-2016 were included (Betz et al., 2013; Gabriel
et al., 2017; Nehring et al., 2015).
In order to ensure that the findings were applicable to the Canadian health system, the
geographical nature of each study was considered. Seven (58%) of the individual studies
included in this paper were conducted in the United States (Berens & Peacock, 2014; Chung

33
et al., 2017; Ciccarelli et al., 2014; Maddux et al., 2015; McManus et al., 2014; Okumura et
al., 2015, Syverson et al., 2016), one (7%) was conducted in Switzerland (Rutishauser et al.,
2014), and one (7%) was conducted in the United Kingdom (Aldiss et al., 2015). The three
(25%) systematic reviews (Betz et al., 2013; Gabriel et al., 2017; Nehring et al., 2015)
included data from all of these countries, as well as Canada, Hong Kong, and Japan. Further
information regarding each papers study aim, sampling, methodology, key findings,
limitations and future research can be found in the literature review matrix (see Appendix E).
The literature analysis resulted in four common themes that influenced health care
transition and were related to the research question: 1) Relationships 2) Fear and Anxiety 3)
Preparedness and 4) Communication and Collaboration. These four themes were derived
from the analysis of the studies’ purpose and findings. It is important to note that in some
instances, findings encompassed more than one theme. While there were a large number of
specific study findings, contextual issues, and social complexities associated to health care
transition for young adults with complex chronic conditions, these were consolidated and
grouped into the four broad themes. Each of these themes had the capacity to influence
health care transitions for young adults. Additionally, these themes organize the following
presentation of the findings and act as a guide for the discussion portion of this paper that
will further explore their influence on health care transition and primary care management.
The following sections will examine the themes in greater detail specifically highlighting
where they were comprised of sub-themes. The sub-themes were composite parts of the
theme but as viewed from a specific perspective i.e. that of the young adult, parents, or
professional.

34
Relationships
For the context of this integrative literature review, relationships refer to the relation
connecting, supporting, or binding participants; family, young adults, or health care
providers, involved in the health care transition process. Relationships were a prominent
theme identified in four of the 12 final studies (Aldiss et al., 2015; Nehring et al., 2015;
Okumura et al., 2015; Rutishauser et al., 2014). This theme was dominant in the analysis and
crossed a range of study methodologies. The significance of this theme was linked to
understanding how relationships impacted young adults during the transition process in order
to identify strategies for primary care provider’s engagement. This section of the integrative
literature review is broken down into two sub-themes: Parent-patient relationships and
provider-patient relationships. Understanding how dyad relationships of parent-patient
relationships and provider-patient relationships directly influenced young adults with
complex chronic conditions during the health care transition process was critical in planning
primary care management.
Parent-patient relationships. The parent-patient relationship was discussed in three
studies (Aldiss et al., 2015; Nehring et al., 2015; Okumura et al., 2015). Overprotection from
parents towards children was considered as ‘sheltering’ by Okumura et al. (2015, p.720) with
the authors concluding that shielding children and youth from taking part in their own health
responsibility negatively impacted the transition process. This became increasingly apparent
at key stages for example, reaching the age of majority forces the now, young adult, to take
on adult responsibilities they feel unprepared for (Okumura et al., 2015). These results were
supported by the systematic review conducted by Nehring et al. (2015) as four of the 55
studies analyzed identified ‘excessive involvement of parents’ as a barrier to implementing

35
health care transition as it inhibited young adults from taking an active role in their own care
(p.738).
Conversely, results from the qualitative studies by Okumura et al. (2015) and Aldiss
et al. (2015) found that the value of having parental presence and family involvement was a
key component for overcoming barriers prior to, during, and after the transfer to adultoriented services. Aldiss et al. (2105), aimed to create standard benchmarks, informed by
primary and secondary data, to facilitate improvements in the quality of transition care for
young adults and their families. Data from stakeholders in transition care (n=21), health care
providers (n=36 with 5 being doctors), and young adults with complex chronic conditions
(n=9) and their mothers (n=9) were collected through focus groups, workshops, and finally
interviews with young people (n=4) and mothers (n=2). Responses from the mothers, health
care professionals, and stakeholders all reported that family members should be involved
throughout the transition process and that family involvement was critical to facilitating the
transfer of responsibility of care over to the young adult. As such, parental involvement was
recommended by authors of the study (Aldiss et al., 2015) as a benchmark for transitional
care best practice.
Okumura, Saunders, and Rehm’s (2015) study further identified that relationships
between providers, young adults, families, and community services were strongly influenced
by advocacy. The purpose of this qualitative study was to develop a better understanding of
how family (n=9), health care professionals (n=12), and community services providers (n=7)
worked together to best assist young adults with complex chronic conditions (n=13) during
the transition process by conducting 41 in-depth interviews within the San Francisco Bay
area. The researchers used a grounded theory design to explore the experiences of the

36
participants involved. Young adults ages 16-25 years with complex chronic conditions who
had either recently transitioned or were preparing to transition to adult-oriented care were
included. Parents, health care providers, and community service members who delivered care
to young adults with complex chronic conditions in outpatient, inpatient, or community care
settings were also included. The collected data was analyzed using the software program
Atlas-ti and strategies such as review by others were used to ensure rigor and trustworthiness
(Okumura et al., 2015).
The results from the 41 in-depth interviews collected and analysed by Okumura et al.
(2015) elicited a variety of issues associated to health care transition. Most reflected common
concerns around three major categories; fighting for healthcare, obtaining resources, and
getting ready for transition (Okumura et al., 2015). The authors identified transition
advocacy as a common tie among all three important social processes and as a critical
component for an effective transition, which resonates with Ladores (2015) concept analysis
of transition. Furthermore, Okumura et al. (2015) noted that young adults reported having
improved transition outcomes and success overcoming barriers when they had a family
member fighting for their needs as this ensured their voices were heard by medical teams and
that they were included in the transition planning. A family member with strong advocacy
skills was especially important for individuals with developmental disabilities who were
unable to articulate their needs by themselves. Additionally, this form of advocacy was
thought to bridge access to necessary resources that were routinely reduced and difficult to
obtain once the young adult reached the age of transfer (Okumura et al., 2015). Young
adults’ capacity to self-advocate was heightened when they had strong familial and social
supports. Moreover, when others effectively advocated for those with complex needs this

37
ensured that the voices of the young adults were heard. Such acts of role-modeling
behaviours appeared to support the young adults to learn to speak for themselves whenever
possible, which facilitated developmentally appropriate transitioning to adult-oriented
services in efficient and effective ways.
The role of the researchers in Okumura et al.’s (2015) study were not discussed, nor
were any potential biases or influences mentioned which, were both weaknesses impacting
study validity. In addition, interviews were limited to individuals living in California, thus
affecting the generalizability as the results may not reflect the same experiences of those
living in BC in which the health system is government directed and supported. Strengths of
the study included the method used, as well as the inclusion of nurse practitioners within the
recruited health care professionals and the diverse representation of complex chronic
conditions (i.e. cystic fibrosis, spina bifida, cerebral palsy, and myasthenia gravis) within the
study participants. Overall, contrasting results were found between these three studies
(Aldiss et al., 2015; Nehring et al., 2015; Okumura et al., 2015), suggesting that the parentpatient relationship can both hinder and facilitate health care transition for young adults with
complex chronic conditions.
Provider-patient relationships. Three studies (Nehring et al., 2015; Okumura et al.,
2015; Rutishauser et al., 2014) discussed the relationship between health care providers and
young adults. A barrier to building new relationships with adult providers hinged on the
close relationships young adults had with their pediatric providers (Nehring et al., 2015;
Okumura et al., 2015; Rutishauser et al., 2014). Pediatric providers often spent time
(Okumura et al., 2015) and effort in building trust with the young adult and their family. As
such, these strong attachments (Nehring et al., 2015) between pediatric providers and young

38
adults impinged on the transition process (Nehring et al., 2015; Okumura et al., 2015). The
tight knit nature of these relationships made connections with new adult-oriented providers
almost impossible (Okumura et al., 2015). Additionally, cutting ties between pediatric
providers and the young adult and family were extremely difficult (Nehring et al., 2015;
Okumura et al., 2015). Okumura et al. (2015) further identified that there were no clear
boundaries that ended the relationship between the pediatric provider and the young adult,
thus compromising the relationship between the young adult and the new adult-oriented
provider.
Feeling at ease with the pediatrician was the most important barrier to effective
transition identified in a quantitative cross-sectional study by Rutishauser, Sawyer, and
Ambresin (2014). In this study the researchers sought to compare perceived barriers and
preferred age for successful transition to adult-oriented care between adolescents with
complex chronic conditions before and after transfer. The overall aim was to examine
whether perceptions of young adults prior to transfer may be influenced by their upcoming
transfer and modified by their experiences after transfer. A cohort of 283 pre-transfer patients
and 89 post-transfer patients were recruited from subspecialty clinics (i.e. cardiology,
endocrinology, pulmonology, nephrology, neurology, gastroenterology, and rheumatology)
at two university children’s hospitals in Switzerland. The specialties included were chosen
because of their large numbers of long-term patients with complex chronic conditions. An
anonymous 28-item (29 items for post-transfer group) study specific questionnaire was used
to compare the two groups. The development of the questionnaire included a literature
search, expert opinion, and focus interviews with young people with complex chronic
conditions. The questionnaire was designed as a descriptive tool and the response options

39
were designed to suit the purpose of the study, using Likert scale responses. Further, data
were analyzed using SPSS 19.0 (SPSS Inc., Chicago), frequency analysis, applying t-test for
continuous variables and Pearson’s chi-square for categorical variables.
The results of the study, (Rutishauser et al., 2014), demonstrated that 48% of the pretransfer group and 32% of the post-transfer group believed that feeling at ease with the
pediatrician was the most important barrier to transfer, however, the odds were two times
higher for the pre-transfer group (OR=2.03, 95% CI 1.12-3.71). Anxiety and lack of
information were also rated as similarly important in both groups (OR=0.67, 95% CI 0.351.28 and OR=0.71, 95% CI 0.36-1.38). Both of these topics will be further discussed in the
following themes of this chapter. A strength of the study by Rutishauser et al. (2014) was the
non-disease-specific recruitment strategy used, as this allowed for a large and diverse sample
to be recruited. The overall evidence from this study would have been strengthened and more
applicable to my research question if conducted within the primary care setting rather than
two Swiss pediatric university hospitals, thereby limiting the generalizability. Further
limitations included the cross-sectional nature of the study design preventing any conclusion
regarding causality. Moreover, very little data were provided in regards to the selection
process of participants which places the study’s outcomes in question.
From this data, understanding the value of feeling at ease with the pediatrician
underlines the importance of helping the young adult build strong and trusting therapeutic
relationships with their future providers. In regard to promoting effective termination of the
pediatric relationship, Nehring et al. (2015), Okumura et al. (2015), and Rutishauser et al.
(2014) recommend initiating transition planning early in order to establish a mutual
understanding and awareness that termination of the existing therapeutic relationship is

40
inevitable. Okumura et al. (2015) and Rutishauser et al. (2014) further suggest setting a final
termination date for pediatric relationships and scheduling an appointment for both parties to
say their final farewells. Okumura et al. (2015) and Rutishauser et al. (2014) hypothesize that
by doing this, young adults may have an easier time facilitating trust with new providers,
reducing the level of anxiety associated to the change in provider relationships.
Fear and Anxiety
Fear and anxiety was the second theme prominent in both qualitative and quantitative
studies, and one systematic review (Betz et al., 2013; Okumura et al., 2015; Rutishauser et
al., 2014). It was evident from the literature, that some young adults and their families were
aware of the inevitable transition, while others were not. Regardless of awareness, health
care transition was frequently characterized by feelings of fear and anxiety. This theme is
relevant to the research question because in order to best meet the needs of these young
adults, primary care providers must have a thorough understanding and awareness of the
different psychological and social factors that influence young adults and their families
during this critical time of change. As such, personal experiences of fear and anxiety
associated to the transition process will be further discussed through the following supportive
themes: patients’ perceptions and experiences, and parents’ perceptions and experiences.
Patients’ perceptions and experiences. Young adults expressed mixed feelings
towards the idea of health care transition in all three studies (Betz et al., 2013; Okumura et
al., 2015; Rutishauser et al., 2014). These feelings stemmed from fear and anxiety as young
adults faced uncertainty and had to learn how to wrestle with these uncomfortable emotions
(Betz et al., 2013; Rutishauser et al., 2014). In addition, they were anxious about the

41
transition process and felt fearful since they did not know how to appropriately navigate the
adult health system (Okumura et al., 2015).
In the aforementioned cross-sectional study conducted by Rutishauser et al. (2014),
participants reported that feeling unprepared, uninformed, and uncertain as to what to expect
in the adult health system increased anxiety, which represented a significant barrier towards
successful transitioning. It was reported that only 50% of the pre-transfer participants had
discussed transition with their pediatrician, while only 10% of the post-transfer participants
believed they had their first discussion about health care transition before 16 years of age
(Rutishauser et al., 2014). These results resonated with findings from Betz, Lobo, Nehring,
and Bui’s (2013) systematic review as a ‘lack of information’. Here the authors identified 12
of their 35 included studies reported young adults felt lost or ill-equipped for the changes
they would encounter during the transition process (Betz et al., 2013). Further, young adults
in Rutishauser et al.’s (2014) study reported being fearful of receiving new treatments in the
adult health system and being concerned that their medical records may get lost during the
transfer, exacerbating feelings of anxiety. Interestingly, these results were similar between
pre- and post-transfer participants; (OR=0.67, 95% CI 0.35-1.28 and OR=0.71, 95% CI 0.361.38), suggesting that the perceived barriers on pre-transfer participants were not strictly the
result of anxiety around upcoming changes. This draws attention to the significant effect
health care transition has on the lives of these young adults.
In addition, pre-transfer participants were hesitant about the thought of the upcoming
transition (Betz et al., 2013; Rutishauser et al., 2014). Specifically, young adults were
uncertain about receiving their future care in an unfamiliar environment (Betz et al., 2013)
and concerned about the future of their health status (Betz et al., 2013; Rutishauser et al.,

42
2014). Potential exposure to infection and the possibility of deteriorating health and its effect
on the young adult’s lifestyle were two prevalent concerns in the literature (Betz et al., 2013;
Rutishauser et al., 2014). These participants were labelled as ‘worried and insecure’ (Betz et
al., 2013), with authors concluding that pre-transfer young adults were anxious around the
unknown long-term consequences of having complex chronic conditions. It was evident from
the results in both studies (Betz et al., 2013; Rutishauser et al., 2014) that an overlap in care
or having the young adult meet their adult provider prior to the final transfer helped to reduce
these fears. Furthermore, both Betz et al. (2013) and Rutishauser et al. (2014) suggest that
teaching these young adults the skills to independently manage their own conditions may
enable them to better negotiate the adult health system and could be expected to further
reduce anxiety both prior to and after the final transfer.
Young adults in the qualitative study by Okumura et al. (2015) found the change in
expectations to be abrupt and challenging, which made the young adults feel apprehensive
towards transition. These feelings were heightened depending on the extent of involvement
from family members and pediatric providers. For example, ‘sheltering’ (Okumura et al.,
2015. p.720) from parents made the transition harder on young adults as it prevented the
young adult from taking on any form of responsibility prior to the transfer, therefore
increasing feelings of anxiety and apprehension towards the transition process. In addition,
pediatric providers who were over-involved and fearful of transferring their patients made
the transition process confusing and difficult for young adults as the boundaries between the
responsibilities of pediatric and adult care providers became blurred (Okumura et al., 2015).
The results from Okumura et al.’s (2015) study suggested that the way families and health

43
care providers coped with transition themselves indirectly influenced the young adult’s
emotional and developmental growth.
Parents’ perceptions and experiences. Parents perceptions and experiences were
briefly highlighted in the aforementioned study by Okumura et al. (2015). Similar to young
adults, family members of young adults with complex chronic conditions reported that adult
care providers gave little to no support for managing new medical equipment or accessing
eligible services within the adult community. This resulted in feelings of fear and
intimidation (Okumura et al., 2015) as parents were left to figure out the system on their
own. Navigating through a new community of different retailers and trying to determine
which kind of equipment was best suited for their now young adult was both challenging and
isolating. Furthermore, the lack of coordination and follow through in services (Okumura et
al., 2015) resulted in delays and potential health complications for the young adult post
transfer. It is important to point out that a purposive sample was used in this study (Okumura
et al., 2015), as such these findings may not be generalizable to all caregivers of young adults
with complex chronic conditions. This being said, the overall results identify that the
psychological well-being of young adults (Betz et al., 2013; Rutishauser et al., 2014) and
family members (Okumura et al., 2015) during the health care transition process are strongly
attributed to a general lack of information and preparation from both pediatric and adult
health care providers.
Preparedness
For the purpose of this paper, preparedness refers to the state of being prepared for
health care transition. This was a frequent theme identified in nine of the final twelve studies:
three of the qualitative studies (Aldiss et al., 2015; Okumura et al., 2015; Syverson et al.,

44
2016), three of the quantitative studies (Maddux et al., 2015; Rutishauser et al., 2014; Chung
et al., 2017), and all three of the systematic reviews (Betz et al., 2013; Gabriel et al., 2017;
Nehring et al., 2015). Preparation was recognized by young adults (Aldiss et al., 2015; Betz
et al., 2013; Gabriel et al., 2017; Maddux et al., 2015; Okumura et al., 2015; Rutishauser et
al., 2014; Syverson et al., 2016), family members (Aldiss et al., 2015; Okumura et al., 2015),
and health care providers (Aldiss et al., 2015; Chung et al., 2017; Maddux et al., 2015;
Nehring et al., 2015) as a facilitator for successful health care transition. Data on transition
preparation initiatives in acute and primary care settings are essential to informing future
program development to ensure that the needs and expectations of young adults, families,
and health care providers are met.
This theme is supported by two sub-themes which emerged as factors influencing
transition preparation in both young adults and health care providers; anticipatory guidance
and health promotion for patients, and health care provider training and proficiency.
Anticipatory guidance and health promotion refer to information given by the health care
provider to young adults and their families in order to prepare them for the expectations of
transition (Aldiss et al., 2015; Betz et al., 2013), encourage independence of their own care
(Syverson et al., 2016), and promote optimal health outcomes (Maddux et al., 2015). This
may include details about health care transition, information about the young adults’
condition, and the development of self-management skills. Health care provider training and
proficiency refers to the skills, knowledge, and qualifications of health care professionals
within the practice of transition care (Nehring et al., 2015).
Anticipatory guidance and health promotion for patients. Seven studies identified
the need for improved transition preparation, planning, and support for young adults with

45
complex chronic conditions (Aldiss et al., et al., 2015; Betz et al., 2013; Gabriel et al., 2017;
Maddux et al., 2015; Okumura et al., 2015; Rutishauser et al., 2014; Syverson et al., 2016).
At present little is known about the level and type of transition preparation (Maddux et al.,
2015) being delivered by health care providers and whether or not it is consistent across
practice settings. As such, Maddux, Ricks, and Bass (2015), sought to examine the range of
transition services provided by pediatric primary care providers. Surveys were distributed to
645 pediatric primary care providers across two states in the Midwest. A cohort of 248
pediatric primary care providers responded working in either community or tertiary practice
settings. From these results, 61.2% (n=152) of the pediatric providers reported that they were
providing some form of transition preparation, planning, or support to patients prior to
transfer. The majority of these respondents endorsed providing a list of adult providers
(n=50) and transferring patients’ medical records (n=30), while only 8.6% (n=13) admitted
to communicating with the receiving adult provider and 2% (n=3) discussed differences
between pediatric and adult care settings (Maddux et al., 2015). Although more than half of
the respondents in this study provided some form of transition preparation, the extent and
type were inconsistent. Furthermore, despite the known benefits of transition preparation for
patients with complex chronic conditions, 40% (n=99) of pediatric providers did not provide
any form of support to their patients prior to the final transfer. Interestingly, Maddux et al.
(2015) found that, despite the wide variance in transition preparation, nearly all of the
pediatric providers’ reported educating patients on lifestyle and risk-taking behaviours such
as safe sex 96.4% (n=239), pregnancy 83.5% (n=207), smoking 99.2% (n=246), alcohol use
97.2% (n=241) and drug use 95.6% (n=237) prior to transfer. This was a positive response as
such topics can be difficult to raise with young people yet are critical for developing adult

46
roles and responsibilities as well as maintaining future health outcomes (Maddux et al.,
2015). The authors of this study (Maddux et al., 2015) further established that primary care
providers had a vital role in initiating and continuing comprehensive lifestyle discussions
throughout the young adults’ lifetime. One notable limitation of this study was the lack of
information on demographic characteristics which restricts the ability to draw conclusions
and comparisons across practice settings. For instance, further details on each of the practice
settings would have provided a better understanding of whether transition services differed
between pediatric primary care providers working in community clinics as compared to those
working in private practices or tertiary settings. Despite this limitation, this study highlighted
the inconsistencies of transition preparation, which may contribute to young adults’ quality
of life or desire to seek follow-up care within the adult health system.
Similar results arose in the qualitative study by Syverson et al. (2016) who aimed to
evaluate the frequency of health care transition anticipatory guidance delivery and its’ impact
on young adults with complex chronic conditions. From a total of 209 young adults ages 1622 years with low to high care needs, 64% (n=134) responded that they had not discussed
transition with their health care provider, 43% (n=90) or their changing health care needs,
with only 57% (n=119) were ‘usually’ or ‘always’ being encouraged to take responsibility of
their care. Specific to the young adults with high care needs (n=48), 54% (n=26) of these
participants had not talked about changes to adult care, however, these numbers were much
less than young adults with lower care needs. These results indicate that individuals with
higher care needs may in fact be receiving more anticipatory guidance compared to young
adults with lower care needs prior to transfer. This being said, the overall percentage of
participants with high care needs receiving transition anticipatory guidance was still rather

47
low (Syverson et al., 2016). In addition, data indicated that young adults with higher care
needs who discussed transition with their health care provider had significantly higher ratings
of perceived transition readiness (95% CI=4.4-8.4). This group had much higher ratings of
transition readiness and likelihood of transition success as compared to those who had not
receive any form of transition care (95% CI=4.7-7.7; 95% CI=6.5-8.6). The cross-sectional
design of this study limits the ability to measure longitudinal data. Moreover, participants of
this study were predominantly African-American and from lower socioeconomic status,
therefore limiting the generalizability of the data.
Correlation between transition preparation and young adults’ perceived transition
readiness was supported in five additional studies (Aldiss et al., 2015; Betz et al., 2013;
Gabriel et al., 2017; Okumura et al., 2015; Rutishauser et al., 2015). The variance in
transition readiness among young adults appeared to be highly dependent on their perceived
self-efficacy in self-management skills (Gabriel et al., 2017; Rutishauser et al., 2015). A need
for more clinical information about the young adults’ conditions and clinical management
was noted in three of the studies (Aldiss et al., 2015; Betz et al., 2013; Okumura et al., 2015)
as both young adults and families reported that preparation contributed to self-reliance,
thereby reducing apprehensions related to health care transition.
Overall, data suggested that structured transition interventions that include
anticipatory guidance and the development of self-management skills have a strong effect on
young adults’ comfort level and their perception of successful transition. From these results,
authors (Gabriel et al., 2017; Syverson et al., 2016) hypothesized that both education and
counselling resulted in higher rates of transition success and decreased morbidity and
mortality in young adults with complex chronic conditions.

48
Health care provider training and proficiency. Four of the eight studies (Aldiss et
al., 2015; Betz et al., 2013; Chung et al., 2017; Nehring et al., 2015) investigated health care
provider experience and knowledge in providing transition services to young adults with
complex chronic conditions. The studies included in this sub-theme explored health care
providers’ experience with and level of comfort in providing transition care (Chung et al.,
2017; Nehring et al., 2015), and desirable attributes of providers who delivered or were
projected to deliver transition care (Aldiss et al., 2015; Betz et al., 2013).
In the systematic review conducted by Nehring, Betz, and Lobo (2015) four of the 55
studies investigated adult provider competency in transition care. Results found that training
in transition care is limited for both pediatric and adult providers. This being said, more
pediatric providers reported having some form of health care transition training included in
their residency as compared to adult providers (93% vs. 13.8%) (Nehring et al., 2015). In
addition, adult providers are at a greater disadvantage as they have limited exposure to and
experience with young adults with complex chronic conditions. As such, professional
reluctance from adult providers towards providing transition care for this population was
eminent throughout the review (Nehring et al., 2015). These opinions largely stemmed from
adult providers’ professional judgement that they lacked the proficiency to be competent and
safe providers (Nehring et al., 2015). Furthermore, authors found that adult providers’
comfort level for delivering transition care was heavily dependent on the level of medical
complexity of the young adult and the level of support available to the provider (Nehring et
al., 2015). Similarly, pediatric providers reported feeling uncomfortable handing care over to
adult providers as they believed that adult providers would not deliver comparable levels of
care to their patients (Nehring et al., 2015). Comparable results were found in the

49
quantitative study conducted by Chung et al. (2015) in that 75% of internal medicine
residents reported being inadequately prepared to care for young adults with complex chronic
conditions, further identifying that approaches for training health care providers in transition
care have not been effectively established. Recommendations from Nehring et al.’s (2015)
systematic review included creating criteria for the transfer of care for young adults with
complex chronic conditions, pre-service training opportunities and continuing education
sessions for practicing providers.
In addition to health care provider level of comfort in transition care, 10 of the 35
studies analyzed in Betz et al.’s (2013) systematic review discussed desirable health care
provider attributes perceived by young adults. Young adults reported that having a provider
who delivered care throughout their life was of utmost importance. Good listening skills and
the ability to show empathy were also desirable. Participants in Aldiss et al.’s (2015) study
supported these results by adding that young adults felt their voices were heard when
providers took the time to listen and subsequently used this information to “learn from the
young people” (p.639). It was also identified that young adults responded more favourably to
providers who viewed them as normal young adults, rather than having their condition define
them (Aldiss et al., 2015). Finally, knowledge about the young adult’s condition, as well as
developmentally appropriate issues such as lifestyle behaviours and sexual health education
were recognized as essential attributes by both the young adult and their families before,
during, and after health care transition (Aldiss et al., 2015; Betz et al., 2013). These data
highlight the relationship between the health care provider’s attitude and approach to care,
and its impact on transition care for young adults.

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Communication and Collaboration
The fourth theme identified within this integrative literature review emphasized the
benefits and challenges associated to communication and collaboration (Aldiss et al., 2015;
Berens & Peacock, 2015; Betz et al., 2013; Chung et al., 2017; Ciccarelli et al., 2014;
Maddux et al., 2015; McManus et al., 2015; Nehring et al., 2015; Okumura et al., 2015). For
the purpose of this review, communication refers to the sharing of information between
health care providers, young adults, and families. Collaboration refers to joint
communication and decision-making with the expressed goal of working together towards
identified health outcomes, while respecting the unique qualities and abilities of each team
member (BCCNP, 2018a). This theme will be supported by two sub-themes: providerprovider communication, and provider-parent communication.
Provider-provider communication. Poor communication between health care
providers and incomplete handover of patient information were factors that contributed to
ineffective health care transitions in four of the final studies (Aldiss et al., 2015; Betz et al.,
2013; Maddux et al., 2015; Nehring et al., 2015). In the qualitative study by Aldiss et al.
(2015), focus groups involving health care providers (n=36) discussed barriers and
facilitators to implementing transition services within their practice sites. Such initiatives
included holding transition days for families and joint transition clinics including pediatric
and adult providers. Surprisingly, the results of the study indicated that such initiatives were
not shared between teams, for example health care providers within the same hospital were
unaware of what colleagues from different specialities had already implemented (Aldiss et
al., 2015). This lack of communication and collaboration among providers resulted in
redundancies and wasted efforts as services were attempting to develop initiatives that either

51
had already been put into place or previously tried and failed with other services (Aldiss et
al., 2015). These results highlight a need for health care providers to share and compare
successful and unsuccessful transition initiatives between other health care services. Aldiss et
al. (2015) hypothesized that information sharing would result in a sense of consistency and
support development of best practice initiatives. A strength of this study was the inclusion
and praise of primary care providers. For example, further results from the focus groups
involving health care professionals addressed the importance of young adults having a
primary care provider and ensuring their inclusion early in transition care. Having care
provided by a primary care provider closer to home was considered a key element in saving
resources and time for young adults and the health team. A limitation of this study was the
small sample size of young adults (n=9) and the lack of complexity among each of their
chronic conditions (i.e. cystic fibrosis, juvenile arthritis, diabetes, chronic fatigue syndrome,
and multiple allergies).
A lack of communication between pediatric and adult providers was identified as a
result of an emerging field of practice within an unprepared system of care, discussed in one
quantitative study (Maddux et al., 2015) and two of the systematic reviews (Betz et al., 2013;
Nehring et al., 2015). Maddux et al.’s (2015) quantitative study emphasized that fewer than
10% of pediatric providers (n=248) within a primary care setting reported having direct
communication or correspondence with the receiving adult provider before, during, or after
the transfer of care. These results resonated with the systematic review conducted by Nehring
et al. (2015) as six of the 55 final studies identified a lack of communication between
pediatric and adult-oriented providers as a system-level barrier that further complicated the
coordination of services. Difficulties accessing medical records was also reported as a

52
significant barrier affecting communication and coordination. Aldiss et al., 2015 determined
that these barriers were largely the result of a care system that was unprepared to support the
provision of transition services. Four of the 35 studies analyzed in Betz et al.’s (2013) review
noted that ongoing communication between pediatric and adult-oriented providers was
essential for care coordination and for overcoming barriers towards successful transitions.
Conversely, a collaborative approach to care was established as a successful strategy
for enhancing health care providers’ communication skills and knowledge in transition care
for young adults with complex chronic conditions. Berens and Peacock’s (2015) qualitative
study with a cohort of n=253 participants including a range of conditions; cerebral palsy
(n=80), Down syndrome (n=54), spina bifida (n=52), genetic conditions not otherwise
specified (n=50) and autism (n=17) emphasized the value in strong working partnerships.
Continued communication was critical when the complexity of the patient extended beyond
the scope of the primary care provider. For example, when patients have complex
comorbidities i.e. sleep apnea or relied on medical equipment (i.e. gastrostomy tubes).
Authors stressed the necessity of pediatric and adult-oriented specialist support to discuss
potential risks, required health screening, and management of secondary diagnoses.
Chung et al. (2017) sought to improve interdisciplinary communication between
pediatric and adult medicine residents’ and establish a pattern of productive collaboration by
implementing training programs within a multidisciplinary transition clinic. Pre-clinic and
post-clinic surveys were used to collect data on health care providers’ experiences, changes
in attitudes, and transition care preparedness. Study data were collected using REDcap
(Vanderbilt University, Nashville, TN) electronic data capture tools, while survey responses
were analyzed using paired t tests. Between pre- and post-clinic assessment, trainees reported

53
statistically significant improvement in preparedness for communicating with colleagues in
other disciplines (P<0.01), counseling young adults and families (P<0.01), and receiving
young adults with complex chronic conditions into care (P=0.04). Although the health care
providers in this study did not represent primary care providers, the overall findings
demonstrate a positive response to the dyadic model of transition care training. Key
limitations of this study included it being restricted to one setting, as well as the use of
surveys to solicit self-assessed changes in attitudes and confidence (Chung et al., 2017).
Results from Chung et al.’s (2017) study were similar to those in an earlier
quantitative study conducted in the United States by Ciccarelli, Brown, Gladstone,
Woodward, and Swigonski (2014). Collaborative approaches to care provided an effective
model in sharing knowledge among health care professionals. Ciccarelli et al. (2014) used an
implementation science approach to develop a statewide transition support program for 129
young adults with complex chronic conditions (71 of which consented to participate in the
study). Training in transition care drew on education from a range of disciplines and
providers (i.e. patient advocates, nursing, medicine, and social work). As health care
professionals acquired new experiences and knowledge in transitional care delivery, this was
subsequently disseminated with their wider networks. Additional resources such as evidencebased chronic condition handouts and device information sheets, medical summaries, care
plans, and transition goals were used to effectively communicated between services and
embed training programs in provider settings (Ciccarelli et al., 2014).
Lastly, a quantitative study performed by McManus et al. (2015) examined the
relationship between quality improvement activities between pediatric and adult primary care
practices and their effect on health care transition. The authors aim was to determine whether

54
pediatric, family medicine, and internal medicine provider’s participation in a two year
learning collaboration would improve the delivery of transition services for young adults
with complex chronic conditions. This time series comparative study involved five primary
care centers in the district of Columbia which adopted the ‘Six Core Elements of Health Care
Transition’, a quality improvement intervention modeled after the AAP, AAFP, and ACPASIM 2011 Clinical Report on Transition (McManus et al., 2015, p.74) to assess quality
improvement in the development of a transition policy, transitioning youth registry,
transition preparedness, transition planning, transfer of care, and transition documentation.
Each center evaluated their practice on the Core Elements using Health Care Transition
Index and feedback was provided via structured interviews. The evaluation was completed
three times over the course of two years. Results of the study identified improvements in all
six transition quality indicators in both pediatric and adult practices. Results of the study
determined that staff knowledge about health care transition doubled within six months of
the intervention and within 22 months all five care centers developed transition policies and
were assessing young adults for self-management and health system navigation skills
(McManus et al., 2015). Further, all care centers highlighted the significance of senior
leadership support and the importance of a team-based approach for best practice. A lack of
time and payment for the added transition work and a lack of functionality of electronic
health records for tracking transition progress were noted as critical challenges affecting the
coordination between sites (McManus et al., 2015). These positive results indicate the
feasibility of an organized transition process using a collaborative approach between
pediatric and adult primary care. However, better methods need to be established for the

55
transfer of information between clinic sites in order to improve communication and
coordination of care during health care transitions.
Provider-parent communication. The qualitative study conducted by Okumura et
al. (2015) identified that navigating young adults through the transition process was further
complicated by a lack of communication between health care providers and families. Many
parents of young adults with complex chronic conditions did not feel well supported during
the health care transition process, which resulted in feelings of frustration and abandonment
(Okumura et al., 2015). One parent in Okumura et al.’s (2015) study expressed a desire for a
more accessible care system, that would reach out and offer services instead of waiting for
parents or young adults to ask for it. These feelings were found to be more prevalent among
families with added social barriers such as lower socioeconomic status, language barriers, or
lower education levels. As such, these individuals felt more intimidated asking for help or
felt less entitled to health services and support (Okumura et al., 2015). The results from this
study highlight the relationship between provider interactions, communication, and access to
care.
Communication and collaboration are two factors affecting health care transitions for
young adults with complex chronic conditions. Examples of both the benefits and challenges
associated to these factors are summarized in the above nine studies. Communication and
collaboration are critical elements within clinical practice that contribute to health care
transition outcomes for young adults and their families.
To summarize, this analysis has provided a critical review of four broad themes
identified within the 12 final studies. In consideration of my research question: “What are the
strategies primary care providers can use to enhance the transition process for young adults

56
ages 15-25 years with complex chronic conditions exiting pediatric services?” This analysis
considers the factors influencing young adults during their health care transition process, the
psychosocial issues associated with ineffective health care transitions, the significance
preparation has on both health care providers and the young adult and the dynamics involved
in communication and coordination of care. The following chapter provides an in-depth
discussion of these findings, further exploring the relationship these themes have on health
care transition and primary care management. The chapter will then conclude with
recommendations for clinical practice, and limitations and recommendations for future
research.

57
Chapter V: Discussion
This integrative literature review was conducted to synthesize the research evidence
from 2012-2018 on primary care management of health care transitions for young adults with
complex chronic conditions exiting out of pediatric services. Young adults with complex
chronic conditions have a rate of survival and functional health status that was not
experienced in the past. The need for their transition to adult care has posed numerous
challenges for health care professionals. By providing insight from the perspectives of key
stakeholders involved in the transition process- young adults, parents, and health
professionals- this literature review has identified four key themes: relationships, fear and
anxiety, preparedness, and communication and collaboration.
It is evident throughout the results of this review that the identified themes are
interrelated as well as persist at the micro, meso, and macro level. These themes continue to
interfere, focus, and question the delivery and implementation of transition services and care
for young adults with complex chronic conditions. This is particularly salient as linked to
experiences of communication between health care providers, young adults, and their
families. Communication was a driver between the micro, meso, and macro levels of
engagement, in developing relationships, embedding evidence-informed practice, sharing
knowledge, and improving coordination of care. Analysis of the literature found that
relationships with young adults can both hinder or facilitate transition preparation, which in
turn can induce fear and anxiety in the young person as they transfer into the unfamiliar
environment of the adult health system. While every individual experiences their own
personal and condition-specific challenges, certain barriers transcend chronic conditions such
as relationships, fear and anxiety, preparedness, and communication and collaboration. These

58
factors were captured throughout the integrative literature review and represented the themes
within the chapter, findings.
This chapter will discuss the importance of health care transition, the application of
the results of this integrative literature review and their relevance to clinical practice
followed by key recommendations for primary care practice. Finally, this chapter will
conclude with a discussion of the limitations of this integrative literature review providing
further recommendations for professional development, policy, and future research on the
topic of health care transition for young adults with complex chronic conditions.
Relationships
Relational barriers fostering dependency were cited in several reviewed studies
(Nehring et al., 2015; Okumura et al., 2015; Rutishauser et al., 2014) as impediments to
adopting self-management skills. The young adult’s relationship with both their family
members and pediatric providers were found to influence the young adult’s ability to be
autonomous with their own care. Family members who took full responsibility of their
child’s care did not encourage self-reliance and often took on elements of care that would
have otherwise been suitable for the young adult to manage independently (Nehring et al.,
2015; Okumura et al., 2015). While no recommendations in the literature were directly
linked to the parent-patient relationship, this remains an important dynamic for primary care
providers to be cognizant of when educating young adults with complex chronic conditions
on health care management issues as part of assessing for transition readiness. Therefore, it is
necessary to involve family members in the transition planning. Such individuals can be a
resource for both youth and the provider as a result of their longitudinal expertise caring for
their child. As families learn to navigate this space primary care providers can bolster the

59
gradual shift in responsibility towards the young person further enhancing the adolescent’s
health management responsibility. An example of how primary care providers can navigate
shifting support approaches while nurturing relationships is via developing opportunities for
one on one appointments without the presence of a family member or caregiver (Nehring et
al., 2015). This approach can help promote effective development of health literacy and
advocacy skills in the young adult prior to transfer. An awareness of the patient-familycentered approach to care and the vital role families have in the lives of young adults with
complex chronic conditions is critical during health care transition. Results from this review
(Aldiss et al., 2015; Okumura et al., 2015) suggest that family members or other individuals
with emotional ties to the young adult may play an instrumental role in perceived
encouragement and influence on overall behaviours. As such, endorsing patient-familycentered care within the primary care setting may open the door to establishing partnerships
between parents and primary care providers. Building and sustaining such approaches can
foster partnerships that, if continued, are likely to facilitate health care transition and enhance
outcomes for young adults.
Similar issues were highlighted in the literature related to provider-patient
relationships. Young adults and families were apprehensive about ending their trusting, longterm relationship with pediatric providers which often interfered with the development of
new provider relationships (Aldiss et al., 2015; Betz et al., 2013; Nehring et al., 2015;
Okumura et al., 2015). Pediatric providers also feared that adult-oriented providers would
either demand a level of independence that the young adult could not possess or that the
young adult’s health would decline due to the adult-oriented providers lack of experience
working with this complex population (Nehring et al., 2015). The literature found that an

60
overlap in care through joint clinics between pediatric and adult-oriented providers or
meeting adult-oriented providers before transfer has the capacity to ease young adults, family
members, and pediatric providers concerns when faced with uncertainty (Aldiss et al., 2015;
Berens & Peacock, 2014; Betz et al., 2013). In addition, establishing a system of
communication where primary care providers check in to ensure young adults attend their
first adult-oriented specialist appointment may reduce feelings of abandonment and promote
trust between the young adult and primary care provider. Finally, the literature highlighted
the importance of scheduling end dates that represent the last visit with pediatric providers.
This may help instill boundaries between providers and young adults and limit the chance of
the pediatric provider relationship interfering with the young adult’s relationships with future
providers (Nehring et al., 2015; Okumura et al., 2015; Rutishauser et al., 2014).
Fear and Anxiety
A lack of understanding of the major service systems and life changes young adults
and their families were to experience was evident throughout the literature. As such, greater
recognition needs to be placed on providing information to young adults and their families
about the transition process, the adult health system, and community supports available post
transfer. Fear and anxiety around health care transition was common throughout the
reviewed literature (Betz et al., 2013; Okumura et al., 2015; Rutishauser et al., 2014). It is
reasonable to consider that pediatric provider’s ambivalence and apprehensions towards adult
care may inadvertently communicate to young adults and their families that transition is
something to be feared. Detailed information about the adult care system and why health care
transition is necessary (i.e. developmentally appropriate care and adult medical services) may
reduce such fears and build an understanding around the need for transition. Using positive

61
language whenever discussing health care transition and viewing the change as a positive
step in the young person’s life may help to reduce any negative connotations associated with
the transition process. Moreover, connecting young adults and their families with peers who
have transferred into adult-oriented care may relieve anxieties and help to establish
connections within the adult community. For example, the use of peer support workers for
assisting young adults transitioning into adult mental health services was evaluated in a study
by Oldknow, Williamson, and Etheridge (2014). Authors concluded that peer support
workers were a valuable asset for promoting patient involvement and reducing perceived
barriers towards health care transition (Oldknow et al., 2014). Although this study was
conducted in the United Kingdom it suggests that the use of peers may be beneficial for
young adults with complex chronic conditions transitioning into adult health services.
Preparedness
The literature identified that providing young adults with clear and comprehensive
information about their conditions and its implications on their physical, sexual, and mental
wellbeing translates into confidence within the health care setting (Betz et al., 2013; Maddux
et al., 2015; Syverson et al., 2016). Furthermore, this confidence, alongside knowledge about
the adult health system, had a positive effect on young adults fears and anxieties towards
health care transition (Betz et al., 2013; Maddux et al., 2015; Nehring et al., 2015). Young
adults who were able to clearly explain their diagnosis, manage their basic care, and were
informed of the expectations of the adult care system reported feeling more comfortable and
prepared for transition (Aldiss et al., 2015; Betz et al., 2013; Maddux et al., 2015). As such,
the results of this review demonstrate an urgent need for consistent delivery of
developmentally appropriate and comprehensive transition education and preparation that

62
begins early in adolescence and continues throughout the young person’s lifetime. This being
said, a discrepancy between best practice and real-life practice for delivering transition care
was also identified in the reviewed literature (Maddux et al., 2015; Syverson et al., 2016).
The frequently cited report on health care transition by AAP, AAFP, and ACP-ASIM (2011)
identifies that comprehensive transition preparation and planning is critical for all young
adults prior to transferring to adult-oriented care. However, it was reported in Maddux et
al.’s (2015) study that just under half of pediatric providers failed to deliver any form of
support to their patients. It was further reported that transition preparation largely consisted
of a list of adult referrals and transferring records (Maddux et al., 2015), suggesting that
comprehensive transition care is rarely being delivered. This level of transition care may be
suitable for those with minor health needs, however, young adults with complex chronic
conditions require a higher level of support and would benefit from such as per the results of
this literature review. While it is well-known that young adults benefit from comprehensive
transition planning and preparation, health care providers, pediatric, adult, and primary care
alike, all lack either the experience, exposure, or knowledge in the field of transition care
(Chung et al., 2017; Nehring et al., 2015; Okumura et al., 2015). As such, there is a clear
need for training and ongoing education in transition care for all health care providers,
particularly primary care providers and adult-oriented providers. Advocating for training
opportunities and accessing available resources such as the Rapid Access to Consultative
Expertise (RACE) line (Providence Health Care, Shared Care Partners for Patients, &
Vancouver Coastal Health, n. d.), and workshops or webinars affiliated with transition care
may help enhance primary care providers knowledge base and increase awareness around the
need for improved training and educational opportunities within this field of care. In

63
addition, issues continue to persist at the meso system-level, regular training for primary care
providers must be established for those who have traditionally cared for these young adults,
as well as for those who will be increasingly called on to care for this unique population.
While training in transition care is crucial, it is essential that providers are also
knowledgeable in adolescent health specifically managing psychosocial and behavioural
issues, particularly around sexual and reproductive health. Primary care providers may
choose to initiate the delivery of self-management skills to support young adults in ways that
enable them to practice the role of health responsibility. Furthermore, to initiate change at the
macro policy-level, primary care providers individually or through their colleges such as the
BC College of Family Physicians and BC College of Nursing Professionals, can partner with
organizations such as Inclusion BC (2018) and Community Living BC (2018) in order to
improve advocacy and awareness around the vocational, educational, and housing needs of
young adults with complex chronic conditions.
Communication and Collaboration
Strong communication skills, multidisciplinary collaboration and consultation are key
success factors in health care transition. A quantitative study by Chung et al. (2017)
identified that multidisciplinary collaboration can positively influence health care provider’s
knowledge and confidence in transition care. This sharing of knowledge can enhance skills,
provide support, and foster connections between providers. Unfortunately, the literature also
identified that very few providers engage in direct communication (Maddux et al., 2015).
This lack of communication was further influenced by inadequate EHR systems that cannot
be universally accessed across care settings (Bahan et al., 2017; Coleman & Berenson,
2004). Such initiatives are crucial for transferring medical information, tracking the

64
transition process, and staying informed in the young person’s care management. Existing
EHR systems need to be adapted to implement standard transition templates that support
personalized care planning and allow for secure universal access among all providers.
Having an established EHR system that is easily accessible with embedded personalized
transition tools will improve coordination of care and promote consistency among health care
professionals.
There are many confounding factors affecting the health of these young adults which
thereby inhibit the transition process (Kaufman et al., 2018; Paone & Whitehouse, 2011). As
such, the quality of communication between the health care provider, the patient, and their
family was a critical component to successful health care transitions identified in the
literature (Okumura et al., 2015). Collaborating with young adults and their families by
including them in the decision-making process, while also inquiring about other aspects
outside of the young adult’s medical needs may help support primary care providers in
bridging this gap in communication. Primary care providers must be cognizant of how social
support, health behaviours, and material circumstances interact to influence health outcomes
for these young adults (Kaufman et al., 2018). Asking the right questions and having an
awareness of available community supports will ensure care is directed around the young
person. Additionally, it will improve access to local services resulting in more
comprehensive, high quality care. The Responsive Intersectoral Children’s Health,
Education, and Research (RICHER) Initiative in Vancouver’s Eastside is an excellent
example of interdisciplinary partnerships within a community setting. They work together
using the expertise and resources available to reduce barriers and address the unique needs of
children, youth, and families in Vancouver’s inner city areas (Lynam et al., 2010). A similar

65
collaborative program that focuses on transition care would benefit young adults with
complex chronic conditions and their families as they prepare to exit pediatric services.
Primary care providers and specialists with an interest in this field of care may choose to
rally together to advocate for the needs of this complex population by speaking with fellow
professionals, community partners, and local Members of the Legislative Assembly (MLA)
about establishing a similar MDT concept within the community informed by the positive
results seen with RICHER.
Primary Care Practice
Primary health care, as compared to a predominant reliance on subspecialty-based
care, is key for providing continuous, high-quality care to patients with chronic conditions
(Okumura et al., 2010). Primary care providers play a pivotal role in health promotion and
care coordination for patients with chronic conditions. As such, it is alarming that the
literature from this review indicates that young adults with complex chronic conditions have
difficulty finding primary care providers (Nehring et al., 2015). It is unclear from the
literature whether this is strictly a result of provider inexperience and a lack of exposure
working with complex young adults or a result of a shortage in primary care providers, or
both. Either way, I suspect that as the role of the nurse practitioner gains increasing
recognition and more young adults with complex chronic conditions continue to transfer over
to adult care, this will change for the better. As increasing numbers of nurse practitioners
enter practice one recommendation would be to connect pediatric specialty care services with
a network of primary care providers who are willing to take on their transitioning patients.
These specialists could partner with the primary care providers, in person or via telehealth,
by gradually handing over care and acting as mentors for future questions or concerns around

66
the young person’s care. This could offer primary care providers a sense of support when
taking on such complex clients and ensure that all young adults exiting pediatric specialty
services are connected to care.
Aligning with the literature, there are four pertinent factors to the success of primary
care providers practicing in transition care. Firstly, all young adults with complex chronic
conditions should have a primary care provider by early adolescence. The second, primary
care providers must be aware of the psychosocial and medical needs of these young adults.
Thirdly, primary care providers need basic training in complex childhood conditions and
transition care, with ongoing opportunities for continuous education and support.
Specifically, multidisciplinary specialist teams have a responsibility to support primary care
practitioners by providing educational opportunities. Lastly, primary care providers need to
consider what their needs are in order to work in partnerships with allied health professionals
to ensure early inclusion in the young person’s life. This will not only enhance coordination
among medical providers, but also promote consistency, support, and trust between primary
care providers, allied health professionals, young adults, and their families.
Through proactive partnerships with allied health professionals, primary care
providers can be confident, competent, and willing components in the transition process
working with young adults with complex chronic conditions. Furthermore, models of care
that do not include primary care providers are more likely to exclude a large portion of young
adults who are unable or unwilling to maintain follow-up in centralized, urban settings.
Thereby, placing these individuals at further risk for delayed treatment and fragmented care
once they are discharged from pediatric services.

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Recommendations for Primary Care Practice
Based upon the aforementioned results, a set of recommendations have been
generated according to the themes of this paper to assist primary care providers in enhancing
the health care transition process for young adults with complex chronic conditions exiting
out of pediatric services. Young adults with complex chronic conditions have distinct health
needs, however, they also require the same psychosocial education (i.e. sexual health and
risk behaviours) and general preventative health measures as healthy young adults. Current
services are failing to meet the needs of these young adults and their families, as evidenced
by the low rates of successful transitions for young adults with complex chronic conditions,
poor health outcomes, inconsistent receipts of transition preparation, and the limited
available evidence to guide primary care providers on how to best care for this unique
population (Betz et al., 2013; Maddux et al., 2013; Syverson et al., 2016; Wang et al., 2010).
The results from this integrative literature review demonstrate that the transition process for
young adults with complex chronic conditions are multifaceted but are largely affected by a
change in relationships and a fragmented health system that impedes communication and
collaboration among those involved. While a full discussion of strategies aiming to change
the organizational and system-level issues is beyond the scope of this paper, the results from
this review nevertheless suggest that there are gaps at the patient-provider level of care. As
such, the following strategies may aim to increase the primary care provider’s ability to
better address the health care transition needs of young adults with complex chronic
conditions, and to enhance the coordination of care between adult and pediatric providers.
The recommendations for primary care practice are summarized in Table 3.

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Table 3
Recommendations for Primary Care Practice
Theme
•

Relationships

Recommendation

Action/Rationale

1. Access support to attain
and maintain working
partnerships and open
communication with allied
health professionals.

1. Promote connected care by
remaining in contact with both
pediatric and adult specialists for
support and advice with care
management.

2. Endorse a patientfamily-centered approach
to care.

2. Individualize care, that
includes both the adolescent and
family in transition process.

3. Encourage young adult
to set final date with
pediatric providers.

3. Setting a final date will create
clear boundaries and make it
easier for young adult to
establish new relationships with
adult-oriented specialists.

4. Organize meet and greet
with adult-oriented
specialists prior to transfer.
•

Fear and
Anxiety

1. Assess the adolescent
and young adults coping
skills.

2. Screen for anxiety and
secondary mental health
conditions before, during,
and after final transfer.

4. Connect with receiving
specialist to introduce self as
primary care provider.
Recommend a meet and greet
with the young adult prior to the
final transfer.
1. Offer counseling options to
adolescents and young adults to
establish effective coping skills
prior to transfer.
2. Use tools such as modified
PHQ-9 and SCARED (AAP,
2012).

3. Ask the young person or 3. Develop individualized
family member about any
transition plan with goals.
fears associated with health
care transition.
-Connect young person and
family members with peers who
have already transitioned.

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•

Preparedness:

-Transition preparation
-Provider Training and
Education

4. Provide information
about the adult health
system and associated
expectations.
1. Begin transition
preparation in early
adolescence.

4. Initiate discussion. Schedule
appointment outside of the clinic
to tour adult care facility or
clinic.
1. Begin discussing health
conditions and basic care
management early on.

2. Promote independence
2. Encourage adolescent to learn
and provide education on
about their conditions and
transitioning responsibility. educate family members around
the importance of independence
and self-efficacy in the young
person.
3. Schedule one to two
appointments annually for
transition care beginning in
early adolescence.

3. Make longer (30 minute)
appointments when discussing
transition care. (i.e. Ten minutes
with family member, ten
minutes alone with young adult,
five minutes together, and five
minutes to answer further
questions).

4. Leave time during
appointments for one-onone conversations with
adolescent and without
family members.

4. Allocate some time during
appointments to see adolescent
alone. Initiate this early on to
build comfort and confidence in
the young person.

5. Assess transition
readiness annually.

5. Access online tools to assess
adolescent’s readiness for
transition.

6. Advocate for
educational and training
opportunities in transition
care and childhood
complex conditions for
health care providers.

6. Take an active role in
advocating for improved funding
and opportunities in transition
education.

7. Participate in continuous
education.

7. Seek out and participate in
available webinars, online
modules, or workshops on
transition related learning

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•

Communication
and
Collaboration

1. Use clear,
developmentally
appropriate language.

opportunities through AAP,
BCCNP, or BCCH.
1. Refrain from using medical
jargon. Use language that the
adolescent can understand and
relate to.

2. Show warmth and
empathy towards young
adults and their families.

2. Use active listening skills.

3. Initiate health care
transition discussion early.

3. Start a casual discussion about
health care transition by the age
of 12 years (if applicable).
Inquire about whether this has
been discussed at all with the
child’s specialists.

4. Provide information on
adult health system to
young adult and families.

5. Include young adult in
decision-making process.

4. Provide pamphlets on the
adult facility and answer
questions regarding the
differences between health
systems and expectations.
5. Ask the young adult what
their health care goals are and
how they would like to achieve
them.
-Provide the young adult with
available options.

6. Stay informed with
medical and community
contacts.

6. Connect with specialists
(pediatric and adult) and request
medical summaries as needed.
-Provide medical summaries to
future providers and the young
adult.
-Keep up-to-date with local
resources and community
support services.

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7. Collaborate with
7. Include all members of the
colleagues and allied health team by establishing clear roles
professionals.
and delegating transition-related
tasks for more comprehensive
transition care. (i.e. include
nursing for transition teaching
and social work for discussing
community services, housing,
insurance changes, and
vocational needs).
8. Call young adult after
first appointment with
adult-oriented specialist to
follow-up.

8. Following up to ensure
appointment was attended.

Recommendations for Education and Professional Development
First and foremost, health care transition, adolescent health, and a basic introduction
to childhood complex conditions should be included in all modern Canadian medical and
health science programs, specifically nurse practitioners, social work, and physicians. This is
especially important as health care providers will continue to see increasing numbers of this
population as time goes on. In BC, nurse practitioners are expected to participate in
continuing education as part of the BCCNP (2018b) nurse practitioner licensing
requirements. As such, ongoing educational opportunities should be available through health
authorities to ensure knowledge is up-to-date and that providers are delivering best practice
evidence-based care. This is especially important for primary care providers and adultoriented specialists as they may not be exposed to this population on a regular basis in their
current practice settings. Group workshops, online modules, or classes through local
universities, BCCNP, and online continuing education websites may be useful resources for
support. Furthermore, creating shadow experiences with pediatricians may be beneficial for
both learning purposes and building rapport between health care professionals. Knowledge

72
and comfort typically comes with consistent exposure and experience, however,
opportunities for continuous education will provide further leverage for primary care
providers to enhance these skills and develop confidence. It is recommended that primary
care providers seek out educational opportunities on transition care where available and
continue to share best practice initiatives with colleagues and other health professionals in
order to bring awareness to the needs of this unique population.
Recommendations for Policy
Nurse practitioners, as primary care providers, are essential advocates for health care
transition policy and program development (Chilton, 2014). With their academic and clinical
background, they have the ability to advocate for current health issues and present cases for
passing legislation (Chilton, 2014). As mentioned earlier, primary care providers with an
interest in complex chronic conditions and health care transition could be supported to
collaborate together to create a network for increasing awareness on the importance of
integrating health care transition into all aspects of pediatric, adolescent, and young adult
health care practice (Reiss & Gibson, 2002). Those with first-hand experience caring for
children and young adults with complex chronic conditions can use their knowledge and
understanding to inform the public and local MLA’s regarding how legislation can impact
these individuals. There have been substantial changes made over the past few decades at the
systems level on the pediatric end of the transition continuum in developing family-centered,
community-based care that is coordinated among services (Reiss & Gibson, 2002). However,
much improvement is needed at the adult-oriented end of the continuum to ensure that health
care services and community supports remain accessible and coordinated for these young
adults and their families.

73
Recommendations for Future Research
Future research that provides further emphasis on effective collaborative strategies,
would be beneficial for practice, as would studies which include examining approaches to
supporting and evaluating primary care practice. Results from the literature identified that
pediatric providers, despite the infrequency, appear to be taking on the primary responsibility
for providing transition care to young adults and their families (Maddux et al., 2015;
Syverson et al., 2016). This is likely a result of training and expertise, however, it raises the
question of whether young adults would receive more comprehensive transition preparation
if the responsibility was shared among all staff (i.e. nursing and social work) (Maddux et al.,
2015). This is plausible as a lack of time and reimbursement methods were frequently
mentioned in the literature (Maddux et al., 2015) as barriers to providing effective transition
care and support to young adults with complex chronic conditions. Furthermore, there is
currently very little data that informs primary care providers or families about the importance
of primary care practice for young adults with complex chronic conditions.
In addition, the literature has identified a need for longitudinal research on transition
care outcomes that are measurable and specific to the young adult (Crowley et al., 2011;
Looman et al., 2013; Nehring et al., 2015). Identifying specific measureable outcomes that
track the health status of young adults with complex chronic conditions over time can be
difficult compared to those who are less medically complex (i.e. diabetes and blood sugars).
Further, a clear definition of what constitutes success that can be compared across the
population is needed. With this in mind, alternative outcomes such as health care service
utilization (location and level of care), and the young adult’s functional status and quality of

74
life as they continue into the adult health system would be beneficial to measure long-term
(Looman et al., 2013).
There is a clear need for further research around alternative funding models that
promote the delivery of quality care by using a collaborative, patient-family centered
approach. Current funding models reward providers for seeing more patients and fail to
reimburse efforts made for coordination of care to ensure gaps in care delivery and
duplication of services are prevented (Looman et al., 2013). Health care reform is currently
driving changes in health care delivery and reimbursement methods. As such, health care
services are slowly moving away from fragmented, multiple provider care towards a MDT
approach, and therefore, funding models are also shifting from a fee-for-service method to
blended or bundling strategies (Looman et al., 2013). Future research on reimbursement
methods that focus on providing complex patients with the time and quality of care they
require and further data on the cost-effectiveness of the primary care provider contribution to
care management would benefit the field of health care transition for this population.
Finally, there is a significant need for research on best practice transition initiatives
(Aldiss et al., 2015) and guidelines. The literature has identified many readily available
transition tools (i.e. Got Transition, Bright Futures, and ONTRAC2) for health care
providers, yet, very few appear to be accessing them (Maddux et al., 2015). The literature did
not provide clear reasons for why these resources are not being used, however, it is possible
that health care providers may not be aware of them, lack the time to seek out and implement
tools into their practice, or simply may not feel they are necessary. Further research on the
use of these tools may identify ways to increase provider use and implement changes so that

75
transition tools can better address the unique needs of young adults with complex chronic
conditions.
Limitations
This integrative literature review is not without its limitations. In general, there are
numerous methodological weaknesses of integrative literature reviews. For example, the act
of combining quantitative and qualitative literature and systematic reviews in terms of data
evaluation and data analysis can be quite involved. Certain methods for data evaluation and
data analysis for such literature reviews are not well established, which can lead to bias or
error in the final results, particularly if the author’s methods are not clearly explained
(Whittemore & Knafl, 2005). Furthermore, the search strategies used should be
comprehensive with clear inclusion and exclusion criteria (Whittemore & Knafl, 2005). Even
though I developed an extensive table of inclusion and exclusion criteria, searched four
online databases, performed hand searching, and networked with key stakeholders involved
in health care transition, it is still possible that data saturation was not fully achieved due to
the nature of the population at focus and the vast amount of available literature.
In addition, unlike most literature reviews that define the population of focus based
on a specific diagnosis or setting, the population of this paper was based on severity, number
of comorbidities, and functional limitations rather than a diagnosis. As a result, it was
impossible to include all childhood complex chronic conditions within this paper, thereby
limiting the generalizability of the study’s findings. Further, very few studies were specific to
primary care or primary care providers, however, the majority of the studies were in some
form relevant to primary care practice. Lastly, there was potential bias in this project as the
author has experience personally and professionally with health care transition and complex

76
chronic conditions. Despite being cognizant of this and taking steps to avoid bias, these
experiences may have skewed the interpretation of the literature and results.

77
Chapter VI: Conclusion
This integrative literature review sought to answer the research question: “What are
the strategies primary care providers can use to enhance the transition process for young
adults ages 15-25 years with complex chronic conditions exiting pediatric services?” A
systematic search of the contemporary literature identified 12 studies. Analysis of the studies
highlighted four key themes: relationships, fear and anxiety, preparedness, and
communication and collaboration. It is evident from the analysis of the literature that health
care transition for young adults with complex chronic conditions is complicated by their
psychosocial development and extensive health and service needs. There is no doubt that this
population will continue to grow as access to care delivery and medical technology continue
to expand. Health care transition is a team effort, however, primary care providers when
encouraged and supported by multi-professional teams can act as the navigator to ensure
transition care is executed and the young person’s needs are being met. Utilization of best
practice initiatives in primary care could improve quality of care and greatly benefit young
adults with complex chronic conditions and their families. Furthermore, additional resources
will need to be devoted to practitioner (i.e. pediatric, adult, and primary care providers)
education to increase the number of providers able to take on these complex patients and the
support from relevant clinical networks, initiatives, and research to achieve this goal. Finally,
system-level changes are needed in order to address policy, funding, and organizational
issues. Overall, health care transition for young adults with complex chronic conditions is an
area of medicine still in its infancy and is an area in which nurse practitioners and primary
care providers alike can deliver leadership and knowledge development moving forward.

78
References
Aldiss, S., Ellis, J., Cass, H., Pettigrew, T., Rose, L., & Gibson, F. (2015). Transition from
child to adult care- ‘It’s not a one-off event’: Development of benchmarks to improve
the experience. Journal of Pediatric Nursing, 30(5), 638-647. doi:
10.1016/j.pedn.2015.05.020
American Academy of Pediatrics [AAP], American Academy of Family Physicians [AAFP],
& American College of Physicians-American Society of Internal Medicine [ACPASIM]. (2002). A consensus statement on health care transitions for young adults
with special health care needs. Pediatrics, 110 (Supplement 3). 1304-1306.
American Academy of Pediatrics [AAP], American Academy of Family Physicians [AAFP],
& American College of Physicians-American Society of Internal Medicine [ACPASIM]. (2011). Supporting the health care transition from adolescence to adulthood
in the medical home. Pediatrics, 128(1), 182-203. doi: 10.1542/peds.2011-0969
American Academy of Pediatrics [AAP]. (2012). Mental health screening and assessment
tools for primary care. Retrieved from https://www.aap.org/en-us/advocacy-andpolicy/aap-health-initiatives/Mental-Health/Documents/MH_ScreeningChart.pdf
American Academy of Pediatrics [AAP]. (2018). Bright future: Prevention and health
promotion for infants, children, adolescents, and their families. Retrieved from
https://brightfutures.aap.org/Pages/default.aspx
Archibald, M. M., & Fraser, K., (2013). The potential for nurse practitioners in health care
reform. Journal of Professional Nursing, 29(5), 270-275. doi:
10.1016/j.profnurs.2012.10.002
Babiker, A., Husseini, M. E., Nemri, A. A., Juryyan, N. A., O’Faki, M., Assiri, A.,…Zamil,
F. A. (2014). Sudanese Journal of Paediatrics, 14(2), 9-16. Retrieved from
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4949805/pdf/sjp-14-9.pdf
Battle Haugh, E. & Mildon, B. L. (2008). Nursing roles, functions, and practice settings. In
L. L. Stamler & L. Yiu (Eds.), Community health nursing: A Canadian perspective
(2nd ed.) (pp. 41-65). Toronto, ON: Pearson Prentice Hall.
BC Medical Association [BCMA]. (2012). Closing the gap youth transitioning to adult care
in BC: A policy paper by BC’s physicians. Retrieved from
https://www.doctorsofbc.ca/sites/default/files/1984-bcma_youth_transitions.web_.pdf
BC Pediatric Society. (n.d.). What is a pediatrician? Retrieved from
http://www.bcpeds.ca/Families/Default.aspx
Berens, J. C. & Peacock, C. (2015). Implementation of an academic adult primary care clinic
for adolescents and young adults with complex, chronic childhood conditions.

79
Journal of Pediatrics: Rehabilitation Medicine: An Interdisciplinary Approach, 8(1),
3-12. doi: 10.3233/PRM-150313
Betz, C. L. (2004). Transition of adolescents with special health care needs: Review and
analysis of the literature. Issues in Comprehensive Pediatric Nursing, 27(3), 179-241.
doi: 10.1080/01460860490497903
Betz, C. L., Lobo, M. L., Nehring, W. M., & Bui, K. (2013). Voices not heard: A systematic
review of adolescents’ and emerging adults’ perspectives of health care transition.
Nursing Outlook, 61(5), 311-336. doi: 10.1016/j.outlook.2013.01.008
Bhawra, J., Toulany, A., Cohen, E., Hepburn, C. M. & Guttmann, A. (2016) Primary care
interventions to improve transition of youth with chronic health conditions from
paediatric to adult healthcare: A systematic review. British Medical Journal, 6(5),
e011871-e011880. doi: 10.1136/bmjopen-2016-011871
Birnkrant, D. J., Bushby, K., Bann, C. M., Apkon, S. D., Blackwell, A., Colvin, M.
K.,…Ward, L. M. (2018). Diagnosing and management of Duchenne muscular
dystrophy, part 3: primary care, emergency management, psychosocial care, and
transitions of care across the lifespan. The Lancet Neurology, 17(5), 445-455. doi:
10.1016/S1474-4422(18)30026-7
Bloom, S. R., Kuhlthau, K., Van Cleave, J., Knapp, A. A., Newacheck, P., & Perrin, J. M.
(2012). Health care transition for youth with special health care needs. Journal of
Adolescent Health, 51(3), 213-219. doi: 10.1016/jadohealth.2012.01.007
Blum, R. W., Garell, D., Hodgman, C. H., Jorissen, T. W., Okinow, N. A., Orr, D. P., &
Slap, G. B. (1993). Transition from child-centered to adult health-care systems for
adolescents with chronic conditions. A position paper of the society for adolescent
medicine. Journal of Adolescent Health, 14(7), 570-576. doi: 10.1016/1054139X(93)90143-D
Blum, R. W. (1995). Transition to adult health care: Setting the stage. Journal of Adolescent
Health, 17(1), 3-5. doi: 10.1016/1054-139X(95)00073-2
British Columbia College of Nursing Professionals. (2018a). Glossary. Retrieved from
https://www.crnbc.ca/Glossary/Pages/Default.aspx
British Columbia College of Nursing Professionals. (2018b). Scope of practice for nurse
practitioners: Standards, limits and conditions. Retrieved from
https://www.bccnp.ca/Standards/RN_NP/StandardResources/NP_ScopeofPractice.pd
f
Campbell, F., Biggs, K., Aldiss, S. K., O’Neill P. M., Clowes, M., McDonagh, J.,…Gibson
F. (2016). Transition of care for adolescents from paediatric services to adult health

80
services. Cochrane Database of Systematic Reviews, 4(CD009794), 1-66. doi:
10.1002/14651858.CD009794.pub2
Canadian Association of Pediatric Health Centres [CAPHC]. (2017). A guideline for
transition from paediatric to adult health care for youth with special health care
needs: A national approach. Retrieved from
https://ken.caphc.org/xwiki/bin/view/Transitioning+from+Paediatric+to+Adult+Care/
A+Guideline+for+Transition+from+Paediatric+to+Adult+Care
Canadian Institutes of Health Research [CIHR]. (2018). Transitions in care. Retrieved from
http://www.cihr-irsc.gc.ca/e/50971.html
Canadian Interprofessional Health Collaborative. (2009). What is patient-centered care?
Retrieved from https://www.cihc.ca/files/CIHC_Factsheets_PCC_Feb09.pdf
Canadian Nurses Association [CNA]. (2015). Primary health care: CNA position statement.
Retrieved from https://www.cna-aiic.ca/-/media/cna/page-content/pdf-en/primaryhealth-care-positionstatement.pdf?la=en&hash=611712E3AAC033BF0C4E94FB3F07F30866F6B692
Canadian Paediatric Society [CPS]. (2003). Age limits and adolescents. Pediatric Child
Health, 8(9), 577. Retrieved from
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2794325/
CanChild. (2018). Spina bifida. Retrieved from https://www.canchild.ca/en/diagnoses/spinabifida
Child Health BC. (2018). Youth transitions. Retrieved from
http://www.childhealthbc.ca/initiatives/youth-transitions
Chung, R. J., Jasien, J., & Maslow, G. R. (2017). Resident dyads providing transition care to
adolescents and young adults with chronic illnesses and neurodevelopmental
disabilities. Journal of Graduate Medical Education, 9(2), 222-226. doi:
10.4300/JGME-D-16-00292.1
Ciccarelli, M. R., Brown, M. W., Gladstone, E. B., Woodward, J. F., & Swigonski, N. L.
(2014). Implementation and sustainability of statewide transitional support services
for youth with intellectual and physical disabilities. Journal of Pediatric
Rehabilitation Medicine: An Interdisciplinary Approach, 7(20), 93-104. doi:
10.3233/PRM-140274
Coleman, E. A. & Berenson, R. A. (2004). Lost in transition: Challenges and opportunities
for improving the quality of transitional care. Annals of Internal Medicine, 141(7),
533-536. doi: 10.7326/0003-4819-141-7-200410050-00009

81
Community Living BC. (2018). Who is CLBC? Retrieved from
https://www.communitylivingbc.ca/who-does-clbc-support/who-is-clbc/
Critical Appraisal Skills Programme [CASP]. (2018). CASP checklists. Retrieved from
https://casp-uk.net/casp-tools-checklists/
Crowley, R., Wolfe, I., Lock, K., & McKee, M. (2011). Improving the transition between
paediatric and adult healthcare: A systematic review. Archive of disease in
Childhood, 96(6), 548-553. doi: 10.1136/adc.2010.202473
Davis, A. M., Rebekah, F. B., Taylor, J. L., Epstein, R. A., McPheeters, M. L. (2014).
Transition care for children with special health care needs, Pediatrics, 134(5), 900911. doi:10.1542/peds.2014-1909
Fair, C., Cuttance, J., Sharma, N., Maslow, G., Wiener, L., Betz, C.,…Ferris, M. (2016).
International and interdisciplinary identification of health care transition outcomes.
JAMA Pediatrics, 170(3)205-211. doi: 10.1001/jamapediatrics.2015.3168
Ferris, M. E., Ferris, M. T., Okumura, M. J., Cohen, S. E., & Hooper, S. R. (2015). Health
care transition preparation in youth with chronic conditions: Working towards
translational evidence with a patient perspective. Journal of Pediatric Rehabilitation
Medicine: An Interdisciplinary Approach, 8(1), 31-37. doi: 10.3233/PRM-150316
Feudtner, C., Christakis, D. A., Connell, F. A. (2000). Pediatric deaths attributable to
complex chronic conditions: A population-based study of Washington State.
Pediatrics, 106(1 Pt 2), 205-209.
Gabriel, P., McManus, M., Rogers, K., & White, P. (2017). Outcome evidence for structured
pediatric to adult health care transition interventions: A systematic review. The
Journal of Pediatrics, 188(e15), 263-269. doi: 10.1016/j.peds.2017.05.066
Goossens, E., Bovijn, L., Gewillig, M., Budts, W., & Moons, P. (2016). Predictors of care
gaps in adolescents with complex chronic conditions transitioning to adulthood.
American Academy of Pediatrics, 137(4), 1-10. doi: 10.1542/peds.2015-2413
Gravelle, A., Davidson, G., & Chilvers, M., (2012). Cystic fibrosis adolescent transition care
in Canada: A snapshot of current practice. Paediatrics & Child Health, 17(10). 553556. Retrieved from
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3549692/#__ffn_sectitle
Gray, W. N., Schaefer, M. R., Resmini-Rawlinson, A., & Wagoner, S.T. (2018). Barriers to
transition from pediatric to adult care: A systematic review. Journal of Pediatric
Psychology, 43(5), 488-502. doi: http://doiorg.prxy.lib.unbc.ca/10.1093/jpepsy/jsx142

82
Grove, S. K., Burns, N., & Gray, J. R. (2013). The practice of nursing research: Appraisal,
synthesis, and generation of evidence. (7th ed.). St Louis, MO: Elsevier
Health Canada. (2009). Reaching for the top: A report by the advisor on health children and
youth [Health Canada, 2007]. Retrieved from https://www.canada.ca/en/healthcanada/services/healthy-living/reports-publications/children/reaching-top-reportadvisor-healthy-children-youth.html#a14
HealthLink BC. (2017). What to expect when you have an extremely premature infant.
Retrieved from https://www.healthlinkbc.ca/health-topics/zx3825
Helgeson, V. S., Reynolds, K., Snyder, P., Palladino, D., Becker, D., Siminerio, L., &
Escobar, O. (2013). Characterizing the transition from paediatric to adult care among
emerging adults with type 1 diabetes. Diabetic Medicine, 30(5), 610-615. doi:
10.1111/dme.12067
Hergenroeder, A. C., Wiemann, C. M., & Cohen, M. B. (2015). Current issues in
transitioning from pediatric to adult-based care for youth with chronic health care
needs. The Journal of Pediatrics, 167(6). doi: 10.1016/j.jpeds.2015.08.005
Hoffman, T., Bennett, S., & Del Mar, C. (2013). Evidence-based practice: Across the health
professions. (2nd ed.). New South Wales, Australia: Elsevier
Inclusion BC. (2018). About inclusion BC. Retrieved from https://inclusionbc.org/about/
Kaufmann, M., Pinzon, J., & Canadian Paediatric Society [CPS]. (2018). Transition to adult
care for youth with special health care needs. Paediatric Child Health, 12(9), 785788. Retrieved from https://www.cps.ca/en/documents/position/transition-youthspecial-needs
Kirk, S. (2008). Transitions in the lives of young people with complex healthcare needs.
Child: Care, health and development, 34(5), 567-575. doi: 10.1111/j.13652214.2008.00862.x
Kuo, A. A., Ciccarelli, M. R., Sharma, N., & Lotstein, D. S. (2018). A health care transition
curriculum for primary care residents: Identifying goals and objectives. Pediatrics,
141(s4), S346-S354. doi: 10.1542/peds.2016-4300L
Loeb, D. F., Bayliss, E. A., Candrian, C., deGruy, F. V., & Binswanger, I. A. (2016).
Primary care providers’ experiences caring for complex patients in primary care: A
qualitative study. Bio Med Central Family Practice, 17(1), 34-43. doi:
10.1186/s12875-016-0433-z
Looman, W. S., Presler, E., Erickson, M. M., Garwick, A. W., Cady, R. G., Kelly, A. M., &
Finkelstein, S. M. (2013). Care coordination for children with complex special health
care needs: The value of the advanced practice nurse’s enhanced scope of knowledge

83
and practice. Journal of Pediatric Health Care, 27(1), 293-303. doi:
10.1016/j.pedhc.2012.03.002
Lynam, J., Loock, C., Scott, L., Wong, S., Munroe, V., Palmer, B. (2010). Social pediatrics:
Creating organizational processes and practices to foster health care access for
children ‘at risk’. Journal of Research in Nursing, 15(4), 331-347. doi:
10.1177/1744987109360651
Madaleno, M. & Waights, S. (n.d.) Guide to scoring methods using the maryland scientific
methods scale. Retrieved from
http://www.whatworksgrowth.org/public/files/Scoring-Guide.pdf
Maddux, M. H., Ricks, S., & Bass, J. (2015). Preparing patients for transfer of care: Practices
for primary care pediatricians. Journal of Community Health, 40(4), 750-755. doi:
10.1007/s10900-015-9994-3
Mahan, J. D., Betz, C. L., Okumura, M. J., & Ferris, M. E. (2017). Self-management and
transition to adult health care in adolescents and young adults: A team process.
Pediatrics Review, 38(7), 305-319. doi: 10.1542/pir.2016-0074
McLaughlin, S. E., Machan, J., Fournier, P., Chang, T., Even, K., & Sadof, M. (2014).
Transition of adolescents with chronic health conditions to adult primary care:
Factors associated with physician acceptance. Journal of Pediatric Rehabilitation
Medicine: An Interdisciplinary Approach, 7(1), 63-70. doi: 10.3233/PRM-140275
McManus, M., Fox, H., O’Connor, K., Chapman, T., MacKinnon, J. (2008). Pediatric
perspectives and practices on transitioning adolescents with special health care
needs to adult health care. Retrieved from https://www.aap.org/en-us/professionalresources/Research/Documents/PS71transition_care_factsheet.pdf
McManus, M., White, P., Barbour, A., Downing, B., Hawkins, K., Quion, N., Tuchman, L.,
Cooley, W. C., & McAllister, J. W. (2015). Pediatric to adult transition: A quality
improvement model for primary care. Journal of Adolescent Health, 56(1), 73-78.
doi: 10.1016/j.jadohealth.2014.08.006
Meacham, L. R., Edwards, P. J., Cherven, B. O., Palgon, M., Espinoza, S., Hassen-Schilling,
L., & Mertens, A. C. (2012). Primary care providers as partners in long-term followup of pediatric cancer survivors. Journal of Cancer Survivorship, 6(3), 270-277. doi:
10.1007/s11764-012-0224-z
Mitchell, G. K., Tieman, J. J., & Shelby-James, T. M. (2008). Multidisciplinary care
planning and teamwork in primary care. The Medical Journal of Australia, 188 (8
Suppl), S61. Retrieved from
https://www.mja.com.au/journal/2008/188/8/multidisciplinary-care-planning-andteamwork-primary-care

84
Mubanga, N., Baumgardner, D. J., & Kram, J. J. F. (2017). Health care transitions for
adolescents and young adults with special health care needs: Where are we now?
Journal of Patient-Centered Research and Reviews, 4(2), 90- 95. doi: 10.17294/23300698.1406
Myers et al. (Eds.). (2006). Mosby’s dictionary of medicine, nursing, & health professions.
(7th ed., pp. 381). St Louis, Missouri: Mosby Elsevier.
National Quality Forum. (2012). Multiple Chronic Conditions Measurement Framework.
Retrieved from
http://www.qualityforum.org/Projects/Multiple_Chronic_Conditions_Measurement_F
ramework.aspx
Nehring,W. M., Betz, C. L., & Lobo, M. L. (2015). Uncharted territory: Systematic review of
providers’ roles, understanding, and views pertaining to health care transition.
Journal of Pediatric Nursing, 30(5), 732-747. doi: 10.1016/j.pedn.2015.05.030
Okumura, M. J., Kerr, E. A., Cabana, M. D., Davis, M. M., Demonner, S., & Heisler, M.
(2010). Physician views on barriers to primary care for young adults with childhoodonset chronic disease. Pediatrics, 125(4), e748-e755. doi:10.1542/peds.2008-3451
Okumura, M. J., Hersh, A. O., Hilton, J. F., & Lotstein, D. S. (2013). Change in health status
and access to care in young adults with special health care needs: Results from the
2007 national survey of adult transition and health. Journal of Adolescent Health,
52(4), 413-418. doi: 10.1016/j.jadohealth.2012.08.005
Okumura, M. J., Saunders, M., & Rehm, R. S. (2015). The role of health advocacy in
transitions from pediatric to adult care for children with special health care needs:
Bridging families, provider, and community services. Journal of Pediatric Nursing,
(30), 714-723. doi: 10.1016/j.pedm.2015.05.015
Oldknow, H., Williamson, K., & Etheridge, K. (2014). Peer support to assist in transition to
adult services. Nursing Times, 110(6), 20-21.
Oswald, D. P., Gilles, D. L., Cannady, M. S., Wenzel, D. B., Willis, J. H., & Bodurtha, J. N.
(2013). Youth with special health care needs: Transition to adult health care services.
Maternal and Child Health Journal, 17(10), 1744-1752. doi: 10.1007/s10995-0121192-7
Ozdemir, A., Utkualp, N., & Pallos, A. (2016). Physical and psychosocial effects of the
changes in adolescence period. International Journal of Caring Sciences. 9(2), 717723. Retrieved from
http://www.internationaljournalofcaringsciences.org/docs/39_Ozdemir_special_9_2.p
df

85
Paone, M. C., Wigle, M., & Saewyc, E. (2006). The ON TRAC model for transitional care of
adolescents. Progress in Transplantation, 16(4), 291-302. doi:
10.1177/152692480601600403
Paone, M. C. & Whitehouse, S. (2011). Developing a transition initiative for youth and
young adults with chronic health conditions and/or special needs in BC: ON TRAC
part 1. Retrieved from http://www.bcchildrens.ca/transition-to-adultcare/Documents/ON%20TRACBackground2011.pdf
Potosky, A. L., Han, P. K., Rowland, J., Klabunde, C. N., Smith, T., Aziz, N.,…Stefanek, M.
(2011). Difference between primary care physicians’ and oncologists’ knowledge,
attitudes, and practices regarding the care of cancer survivors. Society of General
Internal Medicine, 26(12), 1403-1410. doi: 10.1007/s11606-011-1808-4
Providence Health Care, Shared Care Partners for Patients, & Vancouver Coastal Health. (n.
d.) Rapid Access to Consultative Expertise [RACE]. Retrieved from
www.raceconnect.ca
Provincial Health Services Authority [PHSA]. (2018a). British Columbia children’s hospital:
transition to adult care. Retrieved from http://www.bcchildrens.ca/ourservices/support-services/transition-to-adult-care
Provincial Health Services Authority [PHSA]. (2018b). British Columbia children’s
hospital: About our services. Retrieved from http://www.bcchildrens.ca/ourservices/mental-health-services/about
Public Health Agency of Canada [PHAC]. (2014). Congenital anomalies in Canada 2013: A
perinatal health surveillance reports. Retrieved from
http://publications.gc.ca/collections/collection_2014/aspc-phac/HP35-40-2013eng.pdf
Province of BC. (2018). Creating new opportunities for nurse practitioners as part of teambased care system. Retrieved from https://news.gov.bc.ca/releases/2018HLTH0034000995
Raina, P., O’Donnell, M., Rosenbaum, P. L., & Wood, E. (2005). The health and well-being
of caregivers of children with cerebral palsy. Pediatrics, 115(6), e626-e636.
doi:10.1542/peds.2004-1689
Reiss, J. (2012). Health care transitions for emerging adults with chronic health conditions
and disabilities. Pediatric Annals, 41(10), 429-435. doi: 10.3928/0090448120120924-16
Reiss, J. & Gibson, R. (2002). Health care transition: Destination unknown. Pediatrics,
110(3), 1307-1314. Retrieved from

86
http://pediatrics.aappublications.org/content/pediatrics/110/Supplement_3/1307.full.p
df
Roebroeck, M. E., Jahnsen, R., Carona, C., Kent, R. M., & Chamberlain, M. A. (2009).
Adult outcomes and lifespan issues for people with childhood-onset physical
disability. Developmental Medicine & Child Neurology, 51(8), 670-678. doi:
http://proxy.library.unbc.ca:2068/10.1111/j.1469-8749.2009.03322.x
Rutishauser, C., Sawyer, S. M., & Ambresin, A. E. (2014). Transition of young people with
chronic conditions: a cross-sectional study of patient perceptions before and after
transfer from pediatric to adult health care. European Journal of Pediatrics, 173(8),
1067-1074. doi: 10.1007/s00431-014-2291-9
Scal, P. (2002). Transition for youth with chronic conditions: Primary care physicians’
approaches. Pediatrics, 110(6), 1315-1321. doi:
http://pediatrics.aapublications.org/content/110/Supplement_3/1315
SickKids. (2014a). Endocrinology: Transition to adult diabetes care. Retrieved from
http://www.sickkids.ca/Endocrinology/What-We-Do/Diabetes-Programs/Transitionto-Adult-Diabetes-Care.html
SickKids. (2014b). Good 2 go transition program. Retrieved from
http://www.sickkids.ca/Good2Go/index.html
Squiers, A., Lutenbacher, M., Kaufman, M. R., & Karp, S. M. (2017). Transitioning to an
adult healthcare system: Barriers and opportunities for youth with spina bifida.
Pediatric Nursing, 43(6), 289-298.
Statistics Canada. (2016). Health fact sheets: Preterm live births in Canada, 2000 to 2013.
Retrieved from https://www150.statcan.gc.ca/n1/pub/82-625x/2016001/article/14675-eng.htm
Statistics Canada. (2018). Quarterly population highlights. Retrieved from
https://www2.gov.bc.ca/gov/content/data/statistics/people-populationcommunity/population
Syverson, E. P., McCarter, R., Jianping, H., D’Angelo, L., & Tuchman, L. K. (2016).
Adolescents’ perceptions of transition importance readiness, and likelihood of future
success: The role of anticipatory guidance. Clinical Pediatrics, 55(11), 1020-1025.
doi: 10.1177/0009922816666882
The National Alliance to Advance Adolescent Health. (2018). About got transition.
Retrieved from https://www.gottransition.org/
Vaks, Y., Benson, R., Steidtmann, D., Wang, T. D., Platchek, T. S., Zulman, D.
M.,…Milstein, A. (2016). Better health, less spending: Redesigning the transition

87
from pediatric to adult healthcare for youth with chronic illness. Healthcare, 4(1), 5768. doi: 10.1016/j.hjdsi.2015.09.001
Valderas, J. M., Starfield, B., Sibbald, B., Salisbury, C., & Roland, M., (2009). Defining
comorbidity: Implications for understanding health and health services. Annals of
Family Medicine, 7(4), 357-363. doi: 10.1370/afm.983
Viner, R., Transition from paediatric to adult care. Bridging the gaps or passing the buck?
Archives of Disease in Children. 81(3), 271-275. doi:
http://dx.doi.org/10.1136/adc.81.3.271
Wang, G., McGrath, B. B., & Watts, C. (2010). Health care transitions among youth with
disabilities or special health care needs: An ecological approach. Journal of Pediatric
Nursing, 25(6), 505-550. doi: 10.1016/j.pedn.2009.07.003
Whittemore, R. & Knafl, K. (2005). The integrative literature review: Updated Methodology.
Journal of Advanced Nursing, 52(2), 546-553. doi: 10.1111/j.13652648.2005.03621.x
Wong, L. H. L., Chan, F. W. K., Wong, F. Y., & Fok, T. F. (2010) Transition care for
adolescents and families with chronic illnesses. Journal of Adolescent Health, 47(6),
540-546. doi: 10.1016/j.adohealth.2010.04.002
World Health Organization [WHO]. (1998). Health promotion glossary. Retrieved from
http://www.who.int/healthpromotion/about/HPR%20Glossary%201998.pdf
World Health Organization [WHO]. (2005). Chronic diseases and their common risk factors.
Retrieved from http://www.who.int/chp/chronic_disease_report/media/Factsheet1.pdf
World Health Organization [WHO]. (2018). Chronic disease and health promotion report:
Part two. The urgent need for action. Retrieved from
http://www.who.int/chp/chronic_disease_report/part2_ch2/en/
Zhang-Jiang, S. & Gorter, J. W. (2018). The use of the Rotterdam transition profile: 10 years
in review. Official Journal of the German Society for Transition Medicine.
doi: https://doi.org/10.1515/jtm-2018-0002
Zhou, H., Roberts, P., Dhaliwal, S., & Della, P. (2016). Transiting adolescent and young
adults with chronic disease and/or disabilities from paediatric to adult care servicesan integrative review. Journal of Clinical Nursing, 25, 3113-3130.
doi:10.1111/jocn.13326

88
Appendix A: Database Search Strategy and Results
Search Terms
Transition of care
Health care transition
Transition of care OR Health care
transition AND Young adults OR
Adolescents
Transition of care OR Health care
transition AND multimorbidity OR
multiple chronic conditions
Transition of care OR Health care
transition AND primary health care
OR nurse practitioner OR primary care
provider OR family physician
Transition of care OR Health care
transition OR continuity of patient care
OR care coordination AND primary
health care OR nurse practitioner* OR
primary care provider OR family
physician
Totals:

Totals after duplicates removed, titles
screened and limits applied (Dates
changed):

•

Data Bases
Joanna Briggs Institute

•
•
•
•
•
•
•
•
•

CINAHL complete
MEDLINE with full text
PsychINFO
CINAHL complete
MEDLINE with full text
PsychINFO
CINAHL complete
MEDLINE with full text
PsychINFO

N
20
3
835
898
820
11
10
9
337
302
0

•
•
•

CINAHL complete
MEDLINE with full text
PsychINFO

1591
2508
0

•
•
•
•

• CINAHL complete
• MEDLINE with full text
• PsychINFO
• Joanna Briggs Institute
CINAHL complete
MEDLINE with full text
PsychINFO
Joanna Briggs Institute

2774
3718
829
23
219
250
42
6

Electronic Database Search
Results
Total From Databases:
Totals kept after duplicates removed,
titles screened and limits applied
Total kept after titles rescreened and
abstracts read
Total kept after in-depth reading
Total after in-depth reading & handsearching

7,344
517
198
11
12

89
Appendix B: Literature Search Flow Diagram

Joanna Briggs
Institute

CINAHL

MEDLINE

PsychINFO

N: 23

N: 2774

N: 3718

N: 829

Total After Duplicates Removed, Titles Screened, and Limits Applied

N: 6

N: 219

N: 250

N: 42

Total After Titles Rescreened and
Abstracts Read
N: 198
Articles Identified
Through Hand
Searching
N: 1

Number
Excluded
N: 187

Total After In-depth
Reading
N: 12

90
Grey Literature Search Flow Diagram
SickKids
Good 2 Go
Transition
Program

N: 0

American
Academy of
Pediatrics

N: 2

The Canadian
Association of
Paediatric Health
Centres

BCCH
ONTRAC

BC Medical
Association

N: 1

N: 1

N: 1

Networking
Approaches
N: 1
Totals After Reviewing for Relevance
and Inclusion/Exclusion Criteria
N: 0
Number
Excluded
N: 6

91
Appendix C: Level of Evidence Table
Level I

Evidence from a systematic review of all
relevant randomized controlled trials
(RCTs), or evidence-based clinical practice
guidelines based on systematic reviews of
RCTs.
Level II
Evidence from at least one well-designed
RCT.
Level III
Evidence from controlled trials without
randomization.
(ex. Quasi-experimental study)
Level IV
Comparative study with concurrent controls:
• Non-randomized
• Experimental trial
• Cross- sectional study
• Cohort study
• Case-control study
• Interrupted time series without
control group
Level V
Evidence from systematic reviews of
descriptive and qualitative studies.
Level VI
Evidence from a single descriptive or
qualitative study.
Level VII
Evidence from the opinion of authorities
and/or case reports of expert committees.
Adapted from Hoffman, T., Bennett, S., & Del Mar, C. (2013). Evidence-based practice:
Across the health professions (2nd ed.). New South Wales: Australia.

92
Appendix D: Critical Appraisal Skills Program (CASP) Systematic Review Checklist
Three broad issues need to be considered when appraising systematic reviews:
• Section A: Are the results of the study valid?
• Section B: What are the results?
• Section C: Will the results help locally?
Section A: Are the results of the review valid?
1. Did the review address a clearly focused
question?
2. Did the authors look for the right type of papers?

Yes Can’t Tell No
Yes Can’t Tell No

Is it worth continuing?
3. Do you think all the important, relevant studies
were included?

Yes Can’t Tell No

4. Did the review’s authors do enough to assess
quality of the included studies?

Yes Can’t Tell No

5. If the results of the review have been combined,
was it reasonable to do so?

Yes Can’t Tell No

Section B: What are the results?
6. What are the overall results of the review?

Yes Can’t Tell No

7. How precise are the results?

Yes Can’t Tell No

Section C: Will the results help locally?
8 Can the results be applied to the local population?

Yes Can’t Tell No

9. Were all important outcomes considered?

Yes Can’t Tell No

10. Are the benefits worth the harms and costs?

Yes Can’t Tell No
(CASP, 2018)

93
CASP Qualitative Study Checklist
Three broad issues need to be considered when appraising qualitative studies:
• Section A: Are the results of the study valid?
• Section B: What are the results?
• Section C: Will the results help locally?
Section A: Are the results of the study valid?
1. Was there a clear statement of the aims of the research? Yes Can’t Tell No
2. Is a qualitative methodology appropriate?

Yes Can’t Tell No

Is it worth continuing?
3. Was the research design appropriate to address the
aims of the research?

Yes Can’t Tell No

4. Was the recruitment strategy appropriate to the aims of
the research?

Yes Can’t Tell No

5. Was the data collected in a way that addressed the
research issue?

Yes Can’t Tell No

6. Has the relationship between researcher and
participants been adequately considered?

Yes Can’t Tell No

Section B: What are the results?
7. Have ethical issues been taken into consideration?

Yes Can’t Tell No

8. Was the data analysis sufficiently rigorous?

Yes Can’t Tell No

9. Is there a clear statement of findings?

Yes Can’t Tell No

Section C: Will the results help locally?
10. How valuable is the research?

Yes Can’t Tell No
(CASP, 2018)

94
CASP Cohort Study Checklist
Three broad issues need to be considered when appraising cohort studies:
• Section A: Are the results of the study valid?
• Section B: What are the results?
• Section C: Will the results help locally?
Section A: Are the results of the study valid?
1. Did the study address a clearly focused issue?

Yes Can’t Tell No

2. Was the cohort recruited in an acceptable way?

Yes Can’t Tell No

Is it worth continuing?
3. Was the exposure accurately measured to minimize
bias?

Yes Can’t Tell No

4. Was the outcome accurately measured to minimize
bias?

Yes Can’t Tell No

5. a) Have the authors identified all important
confounding factors?
b) Have they taken account of the confounding factors
in the design and/or analysis?

Yes Can’t Tell No
Yes Can’t Tell No

6. a) Was the follow up of subjects complete enough?
b) Was the follow up of subjects long enough?

Yes Can’t Tell No
Yes Can’t Tell No

Section B: What are the results?
7. What are the results of this study?

Yes Can’t Tell No

8. How precise are the results?

Yes Can’t Tell No

9. Do you believe the results?

Yes Can’t Tell No

Section C: Will the results help locally?
10. Can the results be applied to the local population?

Yes Can’t Tell No

11. Do the results of this study fit with other available
evidence?
12. What are the implications of this study for practice?

Yes Can’t Tell No
Yes Can’t Tell No
(CASP, 2018)

95
Appendix E: Maryland Scientific Methods Scale
Level 1

Either A) a cross-sectional comparison of treated groups with
untreated groups, or B) a before-and-after comparison of treated
group, without an untreated comparison group. No use of control
variable in statistical analysis to adjust for differences between treated
and untreated groups or periods.

Level 2

Use of adequate control variables and either A) a cross-sectional
comparison of treated groups with untreated groups, or B) a beforeand-after comparison of treated group, without an untreated
comparison group. In A) control variables or matching techniques
used to account for cross-sectional differences between treated and
control groups. In B) control variables are used to account for beforeand-after changes in macro level factors.

Level 3

Comparison of outcomes in treated group after an intervention, with
outcomes in the treated group before the intervention, and a
comparison group used to provide a counterfactual (e.g. difference in
difference). Justification given to choice of comparator group that is
argued to be similar to the treatment group. Evidence presented on
comparability of treatment and control groups. Techniques such as
regression and (propensity score) matching may be used to adjust for
difference between treated and untreated groups, but there are likely
to be important unobserved differences remaining.

Level 4

Quasi-randomness in treatment is exploited, so that it can be credibly
held that treatment and control groups differ only in their exposure to
the random allocation of treatment. This often entails the use of an
instrument or discontinuity in treatment, the suitability of which
should be adequately demonstrated and defended.

Level 5

Reserved for research designs that involve explicit randomization into
treatment and control groups, with Randomized Control Trials
providing the definitive example. Extensive evidence provided on
comparability of treatment and control groups, showing no significant
differences in terms of levels or trends. Control variables may be used
to adjust for treatment and control group differences, but this
adjustment should not have a large impact on the main results.
Attention paid to problems of selective attrition from randomly
assigned groups, which is shown to be negligible importance. There
should be limited or, ideally, no occurrence of contamination of the
control group with the treatment.
(Madaleno & Waights, n.d.)

96

Appendix F: Literature Review Matrix
Author/Title/Year/
Country

Aim/Setting

Study Design

1.Aldiss et al., (2015)

To develop and
nationally disseminate a
clinical practice
benchmarking tool to
support the structured
comparison and sharing
of good practice in the
transition of young
people from child to
adult health services.

Qualitative:
Grounded Theory
design
using focus
groups,
workshops, and
interviews

Transition from Child
to Adult Care- It’s
Not a One-Off
Event’: Development
of Benchmarks to
Improve the
Experience.
United Kingdom

Setting(s):
University
National Health Services
Hospital Trusts
Hospital Education
Centre
Sports Centre

Characteristics of
Studies & Quality
Assessment
Level of Evidence:
VI
CASP Score:
moderate
Ages:
13-21 years
Study Size:
Stakeholders n=21

Themes/Strategies
Themes:
1)Fear & Anxiety
-Loss of relationships with
pediatric team
-Fear of letting go and placing
trust in new provider
-Fear of the unknown and
what to expect in adult care

Health Professionals
n=36

2)Preparedness
-Preparation required to ease
anxiety

Young People n=13

-Involve young adult

Parents n=11
Conditions Included:
Cardiac
Juvenile Arthritis
Cystic Fibrosis
Chronic Fatigue
Syndrome
Multiple Allergies
Asthma
Diabetes

-Want information early on for
time to prepare
-Gradual process that
gradually promotes health
responsibility (family-centered
to patient-centered)
-Information about what to
expect in adult services
-Individualized transition care

Limitations/ Future
Research
Limitations:
Small population size
Future Research:
Further research is needed
that looks at how the
benchmarks work in
clinical practice.

97

3)Communication &
Collaboration
-Use of consistent staff that
know young adult and their
medical history
-Interpersonal skills;
developmentally appropriate
care and language
-Coordination between
services
-HCP training and awareness
about transition care and
adolescent health
Strategies:
1)Schedule visit to say
goodbye to pediatric team
2)Active listening
3)Encourage joint visits
4)Use of tools
5)Refrain from medical jargon
and offer information in other
medias
6)See young person alone
7)Schedule appointments
specifically for transition care

98

2.Berens & Peacock,
(2014)
Implementation of an
academic adult
primary care clinic
for adolescents and
young adults with
complex, chronic
childhood conditions.
United States

To describe the
development and
implementation of the
Transition Medicine
Clinic, its patient
population and their
resource needs, and
lessons learned.
Setting(s): Transition
Medicine Clinic in
Houston, Texas

Qualitative:
Retrospective
descriptive

Level of Evidence:
VI
CASP Score:
moderate
Study Size:
n=332
Ages:
14-54 years

Themes:
1)Relationships
-Strong relationship should be
maintained with relevant
specialists for support
-Open communication among
all providers, include PCP
early on

Gender: equal

-promote care coordination
through emails, telephone
calls, and telehealth meetings

Conditions Included:
Spina Bifida(52)
Cerebral Palsy(80)
Down Syndrome(54)
Genetic
Conditions(50)
Medically Fragile(39)
Autism(17)

2)Preparedness
-Finding co-management
opportunities to be difficult
due to the complexity
-Lack of disease familiarity
within this population by most
community PCPs and adult
providers
-Lack of experience working
with young adults and
addressing their psychosocial
needs
-Low rates of PCPs accepting
new patients
Strategies:
1)More vigorous management
and screening of secondary
health conditions
2)Inclusion of sexual health
education

Limitations:
Generalizability was
affected as the study was a
natural product of localized
circumstances.
-Initiated by community
interests and passion
-Received grant funding,
otherwise not financially
sustainable under current
reimbursement models
-College has a wellestablished Med-Peds
program with numerous
other HCPs in training.
Future Research:
Research that evaluates
outcome measures such as
ER utilization frequency
and hospital admissions.

99

3)Patient-family-centered care
-Young adults with
intellectual disability require
more family involvement and
more proactive management
-Promote independent selfcare with a printed copy of
care plan at each visit or use
of online resources.
4)Familiarize self with
medical devices (i.e.
gastrostomy tubes) incase
issues arise and necessary
patient resources
5)Longer appointments
6)On-the-job training for
HCPs
7)Use of joint clinics
8)Multidisciplinary approach
-Patients saw an average of
3.8 subspecialists in study,
each specialist required its
own transition plan.
9)Case management meetings
and patient registry organized
by disease

100

3.Betz et al., (2013)
Voices not heard: A
systematic review of
adolescents’ and
emerging adults’
perspectives of health
care transition.
United States,
Canada, European
Union, Australia, and
Hong Kong

To evaluate the research
on health care transition
for adolescence (13-18
years) and emerging
adults (19-29 years) with
special health care needs
from their perspective.

Systematic
Review of:

Level of Evidence:
V

Quantitative
-Cross-sectional
(12)

CASP Score:
strong

-Longitudinal (3)
Setting(s):
Pediatric clinics, adult
clinics, specialty clinics,
and community-based
transition coordination
programs.

Qualitative (10)
Mixed- methods
(9)
Program
evaluation (1)
All but one study
used descriptive
designs.

Themes:
1)Relationships
-Concerned about the
implications for changing the
nature of their relationships
with their parents, peers, and
providers

Limitations:
Lack of information about
ethnicity, mental age, and
academic preparation
makes it difficult to
replicate or compare
studies.

-Uncertain about obtaining
care in an unfamiliar setting
and leaving pediatric
providers

None of these studies
included young adults with
intellectual and
developmental disabilities

Total: n=35

2)Fear & Anxiety
-Feelings of abandonment

Majority of studies had
small sample sizes and
were descriptive designs

Ages:
9-34 years

-Fearful about future health
status

Conditions Included:
Blood Disorders (4)
Cystic Fibrosis (2)
Organ Transplant
Recipients (2)
Rheumatoid Arthritis
(4)
Irritable Bowel
Syndrome (2)
HIV (3)
Congenital Heart
Disease (5)
Endocrine (8)
Spina Bifida (1)
Brain Tumors (1)
Epilepsy (1)
Mental Health (2)
Unidentified (5)

3)Preparedness
-Comfort with HCT
influenced by confidence in
perceived self-efficacy
-Interdisciplinary transition
clinic increased HCT
preparation and selfmanagement skills

Dates Reviewed:
2005-2012
Articles Reviewed:
United States
n= 10
International n=25

-Transition preparation lacked
details needed to better
anticipate the service changes
-Need information about
transition care, community
referrals, and adult services
earlier on

Younger transition- aged
adolescents lack the skills
to adequately make quality
assessments of services.
Majority of findings were
generated from
international studies.
Limited description of
reliability and validity of
tools used.
Future research:
Additional tools that
measure transition
readiness and outcomes are
needed.
Research that examines the
services and/ or supports

101

-Improved HCP knowledge
around complex chronic
conditions

required to become selfsufficient with care needs is
imperative.

-Service coordination among
health care, education, and
employment services

Research that includes
larger and more diverse
samples of young adults in
terms of socioeconomic
status, ethnicity, and
disease-specific conditions
are warranted

-Adjunct support services and
sexual health education
Strategies:
1)Encourage meeting new
providers & visiting adult care
setting prior to transfer
2)Early initiation in transition
planning; provide more
detailed information around
what to expect in adult
services early on.
3)Individualized care plans
4)Involve young adult in care
decision-making process
5)Active listening and
Empathy
6)Provide adjunct support
services and sexual health
education
7)Promote transfer time for
when young adult is in a
healthy, stable state

Qualitative and quantitative
methods with more robust
validity and reliability
metrics
Further research that
considers patient’s
perspectives related to the
transition phase is needed
to develop evidence- based
guidelines.
Research that follows
young adults after
transition is needed to
know what physiological
and psychosocial outcomes
are achieved

102

4.Chung et al., (2017)
Resident Dyads
Providing Transition
Care to Adolescents
and Young Adults
with Chronic
Illnesses and
Neurodevelopmental
Disabilities
United States

Sought to improve
pediatric and adult
medicine residents’
interdisciplinary
communication and
collaboration.
To implement a
collaborative model for
training child and adultfocused residents in
transition care to fill a
substantial gap, as well
as to establish a pattern
of productive
collaboration between
pediatrics and adult
medicine providers.
Setting: Transition clinic

Quantitative:
Quasiexperimental
using pre & posttest surveys

Level of Evidence:
IV
MSMS Score:
Level 2
Ages:
16-26 years
Sample Size:
Residents n=46
Young adult:
Not specified
Conditions Included:
Diabetes Mellitus
Epilepsy
Neurological
Disorders
Mental Health

8)Promote autonomy and selfmanagement skills early on
Themes:
1)Preparedness:
-Positive outcomes (improved
confidence and knowledge) in
self-assessed preparedness to
provide transition care and
engage colleagues around the
care of shared patients.
2)Communication &
Collaboration
-With increased transition care
training using the dyadic
model, internal medicine
trainees reported statistically
significant improvement in
preparedness for
communicating with pediatric
providers (p<.01), counseling
young adults and families
(p<.01), and receiving young
adults into care (p=.04)
-Pediatric trainees reported
statistically significant
improvements in preparedness
for communicating with adult
providers (p<.01), and
counseling families and
preparing patients to transition
(p<.01)
Strategies:
1)Inquire about young adult’s
understanding of their health
conditions and prognosis, self-

Limitations:
Single institution study;
outcomes limited to selfassessment of efficacy and
attitudes
Small number (n=25) of
post-clinic survey results
Future Research:
Further exploration of the
dyadic training model that
includes assessments that
measure sustained
behavioral changes and
further longitudinal studies
are required.

103

care management and health
care navigation skills
2)Discuss personal goals and
QOL
3)Discuss social supports and
pertinent relationships

5.Ciccarelli et al.,
(2014)
Implementation and
Sustainability of
Statewide Transition
Support Services for
Youth with
Intellectual and
Physical Disabilities.
United States

To describe the
development of
ambulatory consultative
transition support
services using an
implementation science
approach.
Setting: Ambulatory
Consultative Transition
Clinic

Quantitative:
Quasiexperimental time
series

Level of Evidence:
III
MSMS Score:
Level 2
Ages:
11-23 years
Gender: 46% female
Sample Size:
n=71 (consented)
Conditions Included:
Cerebral Palsy
Down Syndrome
Intellectual Disability
Autism
Spina Bifida
Angelman Syndrome
Neurological
Traumatic Brain
Injury

4)Development of
interdisciplinary clinics using
a dyadic teaching model
between pediatric and adult
providers
Themes:
1)Preparedness
-Majority of young adults and
families felt underprepared
-Lack of time to address
transition in pediatric primary
care settings and lack of
experience caring for
adolescents in adult primary
care setting are notable
specific barriers affecting
preparation
-Involve young adult and
family when creating medical
summary and health care
transition plan
2)Communication &
Collaboration
-Transition support programs
promote collaboration

Limitations:
Referral bias of youth who
have more high intensity
and complex needs
Despite value of initiating
transition early, average
age of program entry
n=16.6 years
Problems with future
planning occurring during
periods of instability when
patients with complex
health needs and their
families arrive during
crisis. Primary care
providers do not yet have
high familiarity with
transition knowledge and
recommendations to
provide this service to
patients without other
education or support.

104

Osteogenesis
Imperfecta
Prader Willi
Syndrome
Corpus Collosum
Agenesis
Tetrasomy 18

between academic and
community partners
-MDT approach that uses
specialists, PCP, nursing, and
SW together
-Integrate perspectives of
multiple providers to connect
new knowledge and develop
deeper understanding
-Distribute medical summary
and HCT plan among all
providers to ensure everyone
is aware of young adults past
and current health history
-Promote HCP meetings to
review client and clarify goals
of care
-Use tools: Primary and
preventative care guidelines
-One-page evidence-based
chronic condition handouts
and device information sheets
distributed along with patients
summary and health care
transition plan to new adult
PCPs and adult specialists for
educational purposes
Strategies:
1)MDT approach with crosstraining and overlapping of
role responsibilities (PCP,

Future Research:
This type of regional
transition support program
(consultative health care
transition support program
within medical homes)
should be further explored
as an important resource for
primary care practices.
Additional research on selfmanagement program
activities for young adults
with complex chronic
conditions is also needed.

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nursing, patient advocates, and
SW)
2)Use of at least one of the
‘Six Core Elements of HCT’
from GotTransition
3)Ensure young adult has a
medical summary that is
portable and easily accessible
to all providers. Request
documents from specialists as
needed
4)Discuss health care
transition plan by 14 years of
age. Create document with
specialists, nurses, and SW
that consists of current state,
future goals, action plans,
recommendations, and needed
services (health,
education/employment,
independent living, and
community participation)
5)Apply same primary and
preventative care guidelines to
ensure recommended routine
care is achieved. Address
acute and chronic medical
issues as needed
6)Advocate for a care
coordinator to take on
supportive role for
family/young adult and
navigate system during HCT

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7)Embrace ‘whole life’
approach to services, rather
than strictly medical approach.
(Include medical and
psychosocial management)

6.Gabriel et al.,
(2017)
Outcome Evidence
for Structured
Pediatric to Adult
Health Care
Transition
Interventions: A
Systematic Review.
United States
United Kingdom

To identify statistically
significant positive
outcomes in pediatric-toadult transition studies
using the triple aim
framework of population
health, consumer
experience, and
utilization and costs of
care.

Systematic
Review of:

Level of Evidence
II

Quasiexperimental
using pre-post
population
cohorts or
retrospective
cohorts (33)

CASP Score:
strong
Dates Reviewed:
1995- 2016
Articles Reviewed
n=43

RCT (2)
Prospective
Cohort studies (8)

Ages:
Not specified
Sample Sizes: 100 or
more participants in
one quarter of the 43
studies
Conditions Included:
Diabetes Mellitus
Gastrointestinal
Conditions
Transplant Recipients

8)Advocate for more
collaborative educational
opportunities for primary care
providers that increase
knowledge base around
childhood illnesses
Themes:
1)Preparedness
-Structured transition
interventions have resulted in
statistically significant
beneficial outcomes; 28 of the
43 (65%)
-20 of 37 studies (54%) found
improvements in population
health related to improved
adherence to care, QOL,
mortality reduction, and selfcare skills measured through
disease knowledge
-35 out of 43 studies described
transition preparation
activities as an important
transition intervention
-Readiness and self-care
assessments mentioned in 16
of the 43 studies

Limitations:
Studies lacked detailed
descriptions of their
transition process, making
categorizing similar
transition interventions
difficult and linking
outcomes to a specific
transition process
impossible.
-Majority of studies (n=38)
only evaluated transition
interventions for young
adults with a single
condition, thus limiting
applicability for complex
chronic conditions.
-Many studies used data
collection methods of
unknown or untested
validity and reliability.
Future Research:

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Juvenile Idiopathic
Arthritis
Neurological

-Use of tools, one-on-one time
with provider, online
resources, and increased
autonomy
2)Communication &
Collaboration
-Explicit communication
between pediatric and adult
care providers, mentioned in
24 of the 43 studies
-Transfer/medical summaries
mentioned in 20 of the 43
studies
-Designated coordinator to
assist with HCT in 18 of the
43 studies
Strategies:
1)Include self-management
and disease education into
practice.
2)Advocate for transition
programs and transition
coordinators
3)Build partnerships with
providers; pediatric and adult,
to improve coordination of
services
4)Use of tools to promote
communication

-The measures used to
evaluate HCT interventions
were widely variable and
seldom addressed all 3
triple aim domains.
-Several issues need to be
considered in terms of
measures related to
adherence to care,
perceived health and
quality of life, and self-care
skills.
-Very few chronic
conditions have diseasespecific adherence to care
measures, such as HbA1c
for those with diabetes or
tacrolimus levels for those
who have received a
transplant. Consideration of
medication adherence
before and after transfer
may benefit research.
-Almost two-thirds of the
43 studies included in this
review reported positive
outcome results, however
the state of transition
intervention research is still
in its infancy. More
longitudinal research is
warranted.
-Future studies evaluating
transition will benefit from

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5)Establish plans of care and
involve young adult

providing more detailed
descriptions of their
interventions.

6)Orient to adult system
7)Link to community
resources

7.Maddux et al.,
(2015)
Preparing Patients for
Transfer of Care:
Practices of Primary
Care Pediatricians
United States

To examine transition
practices in pediatric
primary care
Setting: Primary care
pediatric clinics,
including private practice
sites, hospitals and
academic medical centers

Quantitative
Non-experimental
design using
anonymous
surveys

Level of Evidence:
IV
MSMS Score:
Level 1
Ages:
N/A
Sample Size:
n=248 primary care
pediatricians
Conditions Included:
Chronic GI
conditions

Themes:
1)Preparedness
-61.2% of primary care
pediatricians provide
planning, preparation, or
support to patients before
transfer
-40% admitted to not
providing any preparation or
support
From the 61.2%:
-32.8% provided names of
adult providers as potential
referrals
-Only 15.1% transfer medical
records to the receiving
provider

-Consideration should be
given to incorporating selfcare skills, not only
disease-specific skills.
-Obtaining anonymous
youth and parent feedback
will be critical for
continuously refining
pediatric-to-adult transition
interventions
Limitations:
Absence of demographic
characteristics on
respondents limits ability to
draw conclusions and
comparisons across sites.
i.e. information on practice
settings would allow better
extrapolation of whether
transition practices differ
between primary care
pediatricians in medical
centers, hospitals, and
private practices.
Data on patient population
treated at each site was not
collected. Unclear what
proportion of pediatric
PCPs provider routine care
to youth with chronic
health conditions and
whether the level and type

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-8.6% discuss different
provider types with young
adult

of transition planning
differs based on the health
status of patients.

-2.6% encourage meeting
young adult without parent’s
present

Future Research:
More focus needs to be
placed on educating health
care providers on transition
care

-1.3% use transition tools
-Educating young adults about
lifestyle behaviors is essential
for preparation for assuming
adult roles and responsibilities
2)Communication &
Collaboration
-8.6% speak directly with
receiving adult provider
-If transition planning is
occurring in primary care
settings, specialty care efforts
might emphasize importance
of having a PCP, thereby
ensuring that comprehensive
care is provided
-Primary care pediatricians
currently taking primary role
for transition planning, yet
40% are not doing this
Strategies:
1)Initiate transition planning
in primary care setting

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2)Communicate directly with
other providers to promote
coordination and clarity
3)Become familiar and use
transition tools
4)Address psychosocial needs
and provide education around
lifestyle behaviors
5)Interdisciplinary approach
-More comprehensive
preparation can be achieved
when everyone works together
(nurses, SW, specialists)

8.McManus et al.,
(2014)
Pediatric to Adult
Transition: A Quality
Improvement Model
for Primary Care.
United States

To determine whether
pediatric, family
medicine, and internal
medicine practices
participating in a 2-year
learning collaborative
(LC) would improve the
delivery of transition
services for youth with
chronic conditions.
Setting: Five academic
primary care practices in
Columbia

Quantitative
Quasiexperimental
design
(time-series
comparative
study)

Level of Evidence:
III
MSMS Score:
Level 2
Ages:
14-24 years
Conditions Included:
Chronic Physical,
Developmental, and
Mental Health
Conditions

6)Advocate for more
educational opportunities
around transition care
Themes:
1)Preparedness
-Use of transition readiness
assessment
2)Communication &
Collaboration
-Use of portable medical
summary with transition
action plan and online registry
-Create systematic method for
tracking transitioning youth
with chronic conditions
Strategies:

Limitations:
Small number of
participating sites (n=5)
and small number of youth
and young adults in the
project (n=400 in three
pediatric sites and n=128 in
two adult sites)
Population represents only
a small geographical area
limiting generalizability

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1)Early initiation: start
transfer preparation no later
than 14 years
2)Identify adult specialists
early and choose a navigator
3)Use of tools
4)Ensure transfer checklist is
completed prior to the first
adult care visit
5)MDT approach

9.Nehring et al.,
(2015)

This systematic review is
designed to answer:

Uncharted Territory:
Systematic Review of
Provider’s Roles,
Understandings, and
Views Pertaining to
healthcare transition

1)What is the state of the
healthcare transition
science pertaining to the
role of providers
involved in this specialty
area of practice

Countries:
United States (26)

2)What research
problems or questions
have been investigated
pertaining to providers
involved with healthcare
transition?

Other nations (27):
Australia
Canada
Europe
Japan

3)What evidence has
been generated that can
be applied to improve the

Systematic
Review of
descriptive and
qualitative studies
including:

Level of Evidence:
V
CASP Score:
strong

Descriptive
qualitative

Dates Reviewed:
2004-2013

Descriptive chart
review

Articles Reviewed:
n= 55

Descriptive
program
evaluation
Descriptive
mixed-methods
Descriptive crosssectional survey

Ages:
Not specified
Professional
Disciplines Sampled:
Pediatricians (10)
Adult medical
providers (4)

6)Incorporate the Six Core
Elements as part of routine
primary care
Themes:
1)Relationships
-Attachment to pediatric
provider and setting
-Over the top parental
involvement that impedes
independence
2)Fear & Anxiety
-Fear of letting go of pediatric
provider and vice versa
-Pediatric providers lack of
confidence in adult providers
3)Preparedness
-Practice limitations of adult
providers

Limitations:
Ages in studies were not
specified in systematic
review
Majority of the studies
reviewed were composed
of small convenience
samples making
generalizations to other
provider populations not
feasible
None of the studies
included were RCTs or
intervention studies
Limited description of
reliability and validity of

112

healthcare transition
training or service
competencies of pediatric
and adult healthcare
professionals?
4)What evidence can be
applied to the provision
of healthcare transition
services for youth with
complex conditions?

Research methods
Semi-structured
interview
Survey
questionnaire
Structured
questionnaire for
interview
Focus groups
Chart reviews
Pre- and post-tests

Pediatrician & Adult
physicians (4)
Interdisciplinary
members (SW,
nurses, pediatricians)
(24)
Adult & Pediatric
interdisciplinary (1)
Conditions Included:
Cardiac
Spina Bifida
Gastroenterology
Cystic Fibrosis
Transplant Recipients
Rheumatology
HIV
Endocrine

-Limited clinical training and
experience working with
young adults with complex
chronic conditions
-Inadequate resources and
training opportunities
-Comfort level was associated
to level of complexity and the
setting (whether or not there
was access to back up medical
specialty support)
4)Communication &
Collaboration
-Insufficient lines of
communication between
pediatric and adult providers
Strategies:
1)Use of tools
2) Advocate for care
coordinator (SW, nurse, peer
navigator, etc.)

tools used in multiple of the
articles
Future research:
Further evidence is needed
to support the use of
intervention approaches
and to develop training
models that will support the
learning needs of
interdisciplinary providers
entering this field of
practice
Studies that explore the
effectiveness of training
curriculums using various
instructional methodologies
for health networks and
community-based
interdisciplinary pediatrics
and adult providers
Research would be
strengthened with
additional provider sample
demographic

3)MDT approach
4)Acknowledge level of
anxiety and fear in family and
young adult
5)Early initiation of transition
preparation

Studies that enable
longitudinal tracking of
young adults into the adult
system of care to determine
the extent of successful
outcomes
Collaborative
investigations that include
both pediatric and adult

113

6)Encourage family to set a
final ‘goodbye’ visit with
pediatric providers

10.Okumura et al.,
(2015)
The Role of Health
Advocacy in
Transitions from
Pediatric to Adult
Care for Children
with SHCN: Bridging
Families, Provider,
and Community
Services
United States

To develop a theoretical
understanding of how
family, healthcare
providers and community
partners can support
young adults with special
health care needs during
the transition to adultoriented services.
Setting:
Subspecialty clinics &
community agencies

Qualitative:
Grounded theory
design using
semi-structured
interviews and
field notes

Level of Evidence
VI
CASP Score:
strong
Ages:
16-25 years (pre/ post
transition)
Sample Size:
Young adults n=13
Parents n=9
Healthcare providers
(NPs, adult and
pediatric nurses,
social workers, and
physicians) n=12
Community service
providers n=7
Conditions Included:
Cystic Fibrosis
Congenital Heart
Disease
Diabetes Mellitus

7)Advocate for and participate
in ongoing transition care
educational opportunities for
primary care providers
Themes:
1)Relationships
-Provider relationships both
barrier/facilitator when it
comes to building
independence
- ‘Sheltering’ young adults
can limit independence and
development of selfmanagement skills
-Young adults often felt
unheard, strong familial
presence was useful for
advocating needs
2)Fear & Anxiety
-Many young adults did not
know how to navigate system
which elicited apprehension
and anxiety towards the
change
-Families anxious around
finding and accessing adult
community services and
resources alone
3)Preparedness

researchers utilizing an
interdisciplinary framework
corresponding to clinical
practice settings

Limitations:
Results have limited
generalizability to all
chronic conditions and
other healthcare systems as
individuals were from
California only and
sampling frame was based
on a purposive sample
Interviews were based on
self- reported experiences
Future research:
Research that evaluates the
effectiveness and role of
persons who can perform
transition advocacy during
the transition process is
needed

114

Spina Bifida
Intellectual Disability
Cerebral Palsy
Inflammatory Bowel
Disease
Myasthenia Gravis

-Poor preparation includes
lack of transfer planning to
adult providers, poor
preparation in gaining selfmanagement skills, and a
general lack of medical
knowledge
4)Communication &
Collaboration
-Fighting health care; constant
struggle to access services and
receive care that meets their
needs due to lack of
collaboration among services
-Conflicts between families,
providers, young adults, and
medical resource suppliers due
to lack of communication
Strategies:
1)Advocate for clients’
transitional needs and
encourage young adults to
develop strong advocacy skills
2)Ensure young adults have an
advocate or someone that is
supporting them during
transition process if parent is
not present
3)Be aware of additional
barriers that may further
implicate transition process
for young adults and families
such as stigma, poverty,

115

language skills, and cultural
barriers
4)Encourage young adult and
families to front load
resources prior to exiting
pediatric services
5)Advocate for improved
funding and access to
resources in adult services
6)Initiate healthcare transition
discussions and planning early
on to promote the
development of independence
and disease management skills

11.Rutishauser et al.,
(2014)
Transition of young
people with chronic
conditions: a crosssectional study of
patient perceptions
before and after
transfer from
pediatric to adult
health care.
Switzerland

To compare perceived
barriers and preferred age
for successful transition
to adult health care
between adolescents with
chronic disorders pretransfer and posttransfer.
Setting: Two Swiss
pediatric hospitals

Quantitative
Cross-sectional
study

Level of Evidence:
IV
MSMS Score:
Level 2
Sample Size:
-Pre-transfer
n=283
-Post-transfer
n=89
Ages:
14-25 years
Conditions Included:
Diabetes
Cardiology

7)Include young adults and
families in transition care.
Themes:
1)Relationships
-Majority (48%) pre-transfer
and (32%) post transfer
reported that their rapport with
the pediatrician acted as a
barrier to transition

Limitations:
Study design precludes any
conclusion regarding
causality.
Generalizability is limited
as based on two Swiss
hospitals.

-Felt at ease with pediatrician
2)Fear & Anxiety
-Anxiety largely associated to
lack of information,
mentioned by both pre- and
post-transfer responses

Psychosocial maturation
and personal circumstance
were not measured in
regards to preferred age of
transition
Future research:

-Change in therapies, loss of
health records, and change in

116

Nephrology
Gastroenterology
Cystic Fibrosis
Neurology
Rheumatology

health status also produced
anxiety
-Meeting adult providers
beforehand may relieve
anxiety
-Joint meetings with pediatric
and adult providers reduced
anxiety and fear

Longitudinal cohort study
that tracks opinions
throughout transition phase
A randomized controlled
trial comparing younger
and older age at transition
or testing different models
of transition support within
either pediatric or adult
care settings

3)Preparedness
-transition readiness highly
dependent on young adults
perceived self-efficacy in selfmanagement skills
Strategies:
1)Take time to build rapport
2)Encourage building
autonomy and developing
self-management skills
3)Encourage young adult and
families to meet with adult
providers prior to official
transfer

12.Syverson et al.,
(2016)
Adolescents’
perceptions of
transition importance,
readiness, and

To evaluate the
frequency of HCT
anticipatory guidance
delivery and the effect it
has on participants’
perceptions of HCT.

Qualitative
Cross-sectional
design

Level of Evidence:
VI
CASP Score:
moderate
Ages:

4)Encourage transfer no
sooner than 19 years
Themes:
1)Preparedness
-43% had not discussed their
changing health care needs
with their provider

Limitations:
Cross-sectional design
limited ability to assess
whether a participants’
perceptions of transition
readiness have any

117

likelihood of future
success: The roles of
anticipatory
guidance.
United States

16-22 years
Sample Size:
n= 209
Conditions Included:
High fx (n=84)
Learning Disabilities
ADHD
Chronic Conditions
(n=22)
Cerebral Palsy
Turners Syndrome
Autism
Anxiety
Depression
Congenital
Anomalies
Complex (n= 55)
Related to
prematurity or
prenatal/perinatal
insults
Genetic Conditions
Autism
Highly Complex
(n=48)
Multisystem Organ
Involvement
ESRD
Heart Failure
Pulmonary HTN
Severe MD

-64% had not discussed
transition

association with the study’s
outcomes

-Those who discussed
transition and their changing
health needs with their
provider had significantly
higher ratings of perceived
likelihood of transition
success and transition
readiness compared to others
(95% CI=4.7-7.7; 95%
CI=6.5-8.6)

-Poor generalizability due
to ethnic background and
socioeconomic standpoint.

-57% reported “always” or
“usually” encouraged to take
responsibility for their health
care needs
-Larger portion with high care
coordination needs reported
unmet anticipatory guidance
-Youth attend fewer
preventative care visits as they
progress through adolescent
years and provision of
anticipatory guidance at these
visits was quite low
-Self-management
encouragement from providers
does not appear to affect
young adults’ perceptions of
transition process as compared
to encouragement from family
members

Future Research:
Longitudinal data that
evaluates changes in young
adults’ perceptions of the
HCT process over time,
with a goal to measure
long-term health outcomes
of anticipatory guidance
and self-management
encouragement is needed.

118

Strategies:
1)Family-centered care was
associated with higher rates of
encouragement to take
responsibility for care
-Family members may play an
instrumental role in both
perceived encouragement and
influence on overall behavior
2)Discuss transition process &
promote self-management
skills by the age of 12 years
(especially those with higher
care coordination needs)