Self-management for youth and young adults with childhood-onset chronic conditions: A scoping review of health care transition planning literature

Abstract

Objective

To determine the extent to which self-management has been investigated and reported in literature focused on the transition from pediatric to adult healthcare for youth and young adults with childhood-onset chronic conditions (CCCs).

Introduction

An estimated 1.2 million youth with CCCs are expected to enter adulthood annually in the United States. As these youth transition from pediatric to adult health systems, they are at risk for experiencing critical gaps in care continuity and adverse health outcomes. Health care transition models have emerged to address these gaps, with self-management recognized as a critical component of successful transition.

Inclusion criteria

The included literature addressed self-management in the context of the transition from pediatric to adult health care for youth and young adults (aged 9–35 years) with CCCs. Results were limited to English-language, peer-reviewed primary research articles.

Methods

A comprehensive search of six databases (MEDLINE, Embase & Embase Classic, CINAHL Complete, PsycINFO, Cochrane CENTRAL, and Web of Science Core Collect) was completed in November 2024. Each record was screened, assessed for eligibility, and extracted by two independent reviewers using the Covidence platform. Data were analyzed and presented using descriptive statistics.

Results

A total of 640 peer-reviewed articles were included. Articles were published between 1989 and April 2025, with the majority (85%) being published post-2014 and originating from the United States (51%). Most studies employed cross-sectional designs (78%) and quantitative methods (61%). Only 89 studies involved an intervention. Study participants included youth or young adults (57%), providers (36%), parents/caregivers (22%), or a combination of these groups (34%). Studies primarily focused on youth with physical conditions (84%) or a combination of condition types (9%). Studies focused solely on intellectual/developmental disabilities (5%) and mental health conditions (<1%) were notably underrepresented. Self-management was primarily examined in relation to condition management only (77%), with 23% of the studies also addressing social and/or community-based outcomes.

Conclusions

This scoping review reveals trends and gaps in the health care transition literature. Key gaps include the paucity of research on self-management in youth with intellectual/developmental disabilities and mental health conditions, limited evidence on post-transfer outcomes, and inconsistent approaches to measuring and defining self-management.

Highlights

• •This review examines over three decades of HCT literature.
• •Self-management is defined and assessed inconsistently across HCT literature.
• •Self-management was primarily examined in relation to condition management.
• •Limited evidence exists on post-HCT outcomes.
• •Individuals with intellectual and developmental disabilities are underrepresented in HCT literature.

1. Introduction

Survival rates for children with childhood-onset chronic conditions (CCCs) have improved significantly, with approximately 90% now expected to reach adulthood.1, 2, 3, 4 As a result, a growing number of youth and young adults (YYA) with CCCs are transitioning from pediatric to adult health care systems. It is now estimated that 1.2 million youth with a CCC enter adulthood in the United States each year⁵. This shift has placed increasing strain on adult health services and has exposed critical gaps in continuity of health care.³ Health care transition (HCT) has emerged within pediatric settings as a service model aimed at addressing these care discontinuities,6, 7, 8 which often lead to adverse clinical outcomes like disease deterioration, transplant rejection, and the onset of secondary conditions.9, 10, 11, 12, 13

Recognizing the global implications of this transition, governments, professional associations, and health care leaders have prioritized the development of structured healthcare transition (HCT) practices that promote continuity of care and the development of self-management skills of HCT practices.14, 15, 16 Betz¹⁴ highlights the increasing emphasis on preparing youth through early, developmentally appropriate self-management training, including building skills in medication management, appointment scheduling, and communication with healthcare providers. Similarly, professional guidance from the Royal College of Nursing¹⁵ underscores the importance of coordinated, multidisciplinary transition planning that begins in early adolescence and includes individualized transition plans, readiness assessments, and active involvement of young people in decision-making. In the school setting, the National Association of School Nurses¹⁶ prioritizes integration across systems by recommending structured transition planning within educational environments, including collaboration between families, schools, and healthcare providers, and the incorporation of health goals into individualized education programs (IEPs) or 504 plans. Collectively, these efforts reflect a broader prioritization of HCT practices that move beyond episodic care toward proactive, skills-based, and system-coordinated approaches designed to support youth in navigating adult healthcare and community systems.

HCT is a rapidly expanding field of practice and research, encompassing not just the logistics of transferring care but the broader developmental process that accompanies adolescence and emerging adulthood. Theoretical models guiding HCT research emphasize the need for comprehensive approaches that support both the medical and psychosocial needs of YYA during this vulnerable period.17, 18, 19, 20 Theoretical models have advanced HCT by emphasizing its multidimensional and developmental nature, but their application remains uneven. The Health Care Transition Research Consortium model¹⁸ frames transition as a longitudinal, multilevel process shaped by interactions among individual skills, family support, provider practices, and healthcare systems. Complementing this, Schwartz et al.²⁰ propose a social-ecological model that situates readiness within nested contexts, highlighting how self-management, relationships, and system-level factors collectively influence outcomes. Condition-specific frameworks further refine these concepts. For example, Schultz & Smaldone¹⁹ identify key intervention components in type 1 diabetes, including structured education, goal setting, care coordination, and gradual transfer of responsibility, underscoring the importance of skill-building and system navigation. Similarly, Holmbeck et al.¹⁷ extend theory in spina bifida by integrating developmental, family, and psychosocial processes with measurable transition outcomes, emphasizing autonomy, adherence, and functional independence. Together, these models reinforce that effective HCT requires coordinated, multilevel interventions; however, much of the empirical literature continues to prioritize individual-level factors, with insufficient integration of family, system, and contextual influences described in these frameworks.

Professional organizations reinforce these theoretical perspectives through clear expectations for practice. The American Academy of Pediatrics (AAP), along with the American Academy of Family Physicians and the American College of Physicians, recommends early, structured, and individualized transition planning beginning in adolescence, with an emphasis on readiness assessment, self-management skill development, and planned transfer to adult care²¹. International guidance, such as that from UK and European bodies, similarly prioritizes coordinated, youth-centered, and developmentally appropriate transition processes that integrate health, social, and educational systems 15, 22. Collectively, these professional stances align with theoretical models in advocating proactive, multilevel, and systems-oriented approaches, yet are only partially reflected in much of the empirical literature, which continues to focus narrowly on individual-level readiness.

A central component of successful HCT is self-management, the ability of YYA to competently manage their chronic condition across all domains of daily life, including home, school, work, and social settings. Self-management is a skill learned and developed over time, beginning in childhood and advancing with age and experience.14, 23, 24, 25, 26, 27, 28, 29 It encompasses both treatment-related tasks and everyday activities necessary for independent living. Despite its conceptual link to transition readiness and long-term success, the literature varies in its thoroughness in addressing the full scope of self-management skills within the context of HCT.

While the body of HCT literature continues to grow, few publications have described original research studies focused specifically on the self-management of physical, intellectual/developmental, and mental/emotional health. This scoping review aims to elucidate this gap by examining how self-management is represented across the HCT research literature. The extent to which this component is included in published research is unknown, and limited information exists on which chronic conditions have been studied, what sample characteristics are reported, and how self-management has been defined and operationalized. A preliminary search of PROSPERO and the JBI Database revealed no scoping or systematic reviews, confirming the need for this investigation.

The following scoping review question guided this investigation of self-management in the HCT literature concerning CCCs.

1.1. Scoping review question

To what extent is self-management investigated and reported in HCT literature concerning YYA with childhood-onset chronic conditions (CCC), i.e., long-term conditions, special health care needs, medically complex conditions, developmental and/or intellectual disabilities, and/or chronic illnesses?

1.2. Purpose

The purpose of this scoping review was to systematically map and synthesize the existing literature, characterize when and how research has been conducted, including study designs, populations, and geographic distribution, and identify key gaps in the evidence base.

Consistent with established scoping review methodology, this study was designed to provide a comprehensive, high-level overview of a large and heterogeneous body of evidence rather than a detailed appraisal of individual studies. Findings of over 640 studies are presented at an aggregated level of synthesis to facilitate identification of overarching patterns and trends.

This manuscript provides an overview of the field and forms part of a broader body of work, alongside three complementary manuscripts by the same authors that offer more detailed analyses of specific subdomains. Together, this approach aims to balance breadth and depth, effectively characterizing the overall evidence landscape and informing future research priorities.

2. Methods

2.1. Search strategy and eligibility criteria

This scoping review adhered to the JBI Manual for Evidence Synthesis to ensure a systematic, rigorous, transparent, and trustworthy review process³⁰. An a priori protocol was previously published in JBI Evidence Synthesis.³¹

A clinical and research librarian, in collaboration with the research team, conducted a comprehensive search of six databases (MEDLINE, Embase & Embase Classic, CINAHL Complete, PsycINFO, Cochrane CENTRAL, and Web of Science Core Collect). Appendix A. Search Strategy. Each record was screened, assessed for eligibility, and extracted by two independent reviewers using the Covidence platform. Data were analyzed and presented using descriptive statistics. Following this comprehensive search, all citations were imported into Covidence, an online systematic review management platform (Veritas Health Innovation, Melbourne, Australia) with duplicates removed.

2.2. Inclusion criteria

The inclusion criteria for this scoping review were developed a priori in accordance with the Joanna Briggs Institute (JBI) methodology for scoping reviews and structured using the Population–Concept–Context (PCC) framework.

Population. This review considered studies including youth and young adults (YYA) aged 9–35 years with special health care needs (SHCN) or a childhood-onset chronic health condition. This age range was selected to reflect the continuum of self-management development, which may begin prior to formal health care transition (HCT) planning and extend into adulthood.

Concept. The concept of interest was self-management. For the purposes of this review, self-management was defined as the processes and outcomes associated with the acquisition and application of knowledge, skills, and behaviors required to manage the day-to-day and long-term demands of a chronic health condition. Studies were included if self-management was explicitly examined as: an outcome (primary or secondary), a predictor or covariate, or the focus of an intervention, qualitative exploration, or mixed-methods investigation. Studies addressing self-management within the context of HCT planning were also considered eligible.

Context. This review considered studies conducted in any geographic location and across all settings, including healthcare, community, and educational contexts. No restrictions were placed on publication date. Only studies published in English were included.

This review considered peer-reviewed studies reporting original empirical data, including quantitative, qualitative, and mixed-methods studies, as well as quality improvement initiatives.

Following an initial screening of titles and abstracts, the inclusion criteria were refined to enhance feasibility and methodological clarity. Specifically, only studies in which self-management was clearly defined, operationalized, or measured were included to ensure consistency in study selection and data extraction.

Studies were excluded if they: did not include participants within the specified age range or population of interest (i.e., YYA with SHCN or childhood-onset chronic conditions); did not explicitly address or operationalize self-management (e.g., only peripheral or undefined references); were not peer-reviewed or did not report original empirical findings (e.g., reviews, editorials, commentaries/editorials, protocols, book chapters); were not published in English.

These criteria were applied to the screening of titles and abstracts of all citations by all authoring team members reviewing pairs during all phases of the review. All citations that were retained for full-text review underwent an additional evaluation for inclusion in the final sample by two independent reviewers. Discrepancies at both the title/abstract and full-text phases of screening were reconciled through a third independent review. The outcomes of each phase of the search process are presented in the Preferred Reporting Items for Systematic Reviews and Meta-Analyses for Scoping Reviews (PRISMA-ScR) flow diagram (Fig. 1³²;). This process resulted in 640 individual research studies included in this review. Appendix B. List of Included Studies

Fig. 1.

PRISMA flow diagram.

2.3. Data extraction and analysis

A modified data extraction tool was developed based on the original protocol³¹ and used to extract data using the Covidence online platform (Appendix C. Extraction Tool). Two team members independently extracted data, with consensus determined by a third reviewer (in some instances, consensus was provided by one of the team members who completed the initial extraction). Data cleaning and analysis were conducted in Microsoft Excel, with appropriate descriptive statistics calculated based on the level of data and its relevance to the purpose of the scoping review.

3. Results

3.1. Characteristics of included studies

All research studies (N = 640) were published between 1989 and April 2025 in peer-reviewed journals, with 85% (n = 541) having been published since 2014. There is a noticeable lack of publications in the first two decades, followed by a considerable uptick in publications beginning in 2014 (Fig. 2). Studies were most frequently published in the Journal of Pediatric Nursing (n = 45, 7%), followed by Journal of Adolescent Health (n = 24), Child: Care, Health and Development (n = 22), and Journal of Pediatric Psychology (n = 21), each contributing to about 3% of the published self-management research literature.

Fig. 2.

Publication Years.

Just over half (51%; n = 327) of all published research on the self-management of YYA with special health care needs was conducted in the United States. Canada contributed 78 studies (12%), followed by the United Kingdom (n = 40, 6%), the Netherlands (n = 26), Sweden (n = 16), Australia (n = 14), Germany (n = 11), and Turkey (n = 10); each of the latter five only contributed to less than 5% of the research literature. In total, 43 individual countries contributed at least one publication, comprising 98% (n = 626). The remaining 2% (n = 14) of the studies were conducted collaboratively by two or more countries, including a European collaborative comprising 24 countries.

The majority (n = 502, 78%) of the research methods employed a cross-sectional design. Quantitative studies comprised 61% (n = 388) of the published literature, while qualitative studies accounted for 30% (n = 194). The remaining 9% (n = 58) of the studies were classified as mixed methods (Table 1). One-fifth (26%, n = 94) of the combined quantitative and mixed-methods studies included an intervention. (Table 1).

Table 1.

Research Methodology and Design.

	n	%
Method
Quantitative	388	61
Qualitative	194	30
Mixed Methods	58	9
Design
Longitudinal	138	22
Cross-sectional	502	78
Intervention (Quantitative and Mixed Methods Studies)	94	26

3.2. Research sample

YYAs were the research participants in over half (57%, n = 362) of the studies, with 34% (n = 220) comprising mixed samples that included YYAs, parents/caregivers, and providers. Few studies queried solely providers (n = 36, 6%) or parents/caregivers (n = 22, 3%), or a combination of the two (n = 2, <1%)(See Table 2). Sample sizes ranged widely, from 2 studies enrolling small samples of just 4 participants each to 3 studies enrolling large samples of 18,198, 20,708, and 55,022 participants. The median sample size for all studies (n = 640) was 68.

Table 2.

Research Sample.

	n	%
Single-Group Sample
Individual (YYA)	362	57
Provider	36	6
Parent/Caregiver	22	3
Combined Group Samples
Individual (YYA) and Parent/Caregiver	148	23
Individual (YYA) and Provider	24	4
Parent/Caregiver and Provider	2	< 1
Individual (YYA), Parent/Caregiver, and Provider	46	7

The majority of YYA self-management studies focused on the 12–15 and 16–20 age groups, which together accounted for 40% (n = 253) of the published literature. YYA age was not reported in 36 studies (see Table 3). The gender of the YYA was reported in 554 studies (87%), of which 523 (94%) included male and female participants. Fourteen studies included participants reporting as transgender, non-binary, and/or gender diverse. Among studies reporting the race of the YYA (n = 268, 42%), the majority (n = 246, 92%) included individuals from diverse races/ethnicities. It is important to note that studies conducted in the US were most likely to report race/ethnicity.

Table 3.

Represented Age in Years.

	n	%
Single-Group Sample
12–15	18	3
16–20	69	11
21–25	6	< 1
26 +	1	< 1
Combined Group Samples
12–15 and 16–20	166	26
12–15, 16–20, and 21–25	127	20
12–15, 16–20, 21–25, and 26 +	43	7
16–20 and 21–25	110	17
16–20, 21–25, and 26 +	53	8
21–25 and 26 +	11	2
Age not reported	36	6

Primary diagnoses were classified as physical, mental/emotional, intellectual/developmental disability (IDD), and combinations thereof based on conditions included as developmental disabilities in two large nationally representative surveys in the US: the National Survey of Children’s Health (NSCH) and the National Health Interview Survey (NHIS). Diagnoses that were classified as mental/emotional included those listed in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM−5), excluding conditions already included under the IDD category.

The majority of the diagnoses were classified as physical (n = 539, 84%). A quarter (n = 161, 25%) of the studies captured multiple diagnoses, while the remaining studies focused on individual conditions. Of those, diabetes self-management was exclusively addressed in 20% (n = 110) of the published literature, followed by inflammatory bowel disease (n = 59, 11%). Less than 10% of the studies examined samples with rheumatic disease (n = 38, 6%), sickle cell disease (n = 32, 6%), congenital heart disease (n = 34, 5%), HIV (n = 26, 5%), cancer (n = 25, 5%), cystic fibrosis (n = 22, 4%), spina bifida (n = 20, 4%), epilepsy (n = 17, 3%), chronic kidney disease (n = 15, 3%), liver transplant (n = 14, 3%), asthma (n = 12, 2%) and kidney transplant (n = 10, 2%). Other individual physical diagnoses were studied to a lesser extent, contributing fewer than ten publications each. In all, self-management for over 38 distinct physical diagnoses was reported in the literature. Self-management for those with IDD (n = 35, 5%) and mental/emotional diagnoses (n = 5, <1%) was far less common. Among them, self-management for autism spectrum disorder was represented in nine publications. Self-management in samples with a mix of Physical, IDD, and/or Mental/Emotional diagnoses comprised 59 studies (10%), 11 (2%) of which included all three categories. Table 4.

Table 4.

Primary Diagnosis Category.

	n	%
Single-Group Sample
Physical	539	84
Intellectual/Developmental Disability (IDD)	35	5
Mental/Emotional	5	< 1
Combined Group Samples
Physical and Intellectual/Developmental Disability (IDD)	41	6
Physical and Mental/Emotional	6	< 1
Intellectual/Developmental Disability (IDD) and Mental/Emotional	1	< 1
Physical, Intellectual/Developmental Disability (IDD), and Mental/Emotional	11	2
Diagnosis not specified	2	< 1

3.3. Research outcome: self-management

The majority of the published literature pertaining to self-management focused exclusively on self-management related to condition management (n = 492, 77%; i.e., the YYA understanding and speaking about their medical condition and treatment, monitoring their own status on an ongoing basis, and discussing their treatment goals.³³ Just one study focused exclusively on the vast array of community-based and social situations, such as seeking/accessing community services and support. Just under a quarter (n = 147, 23%) studied both condition management and seeking/accessing community services and support. See Table 5. Of the combined studies addressing self-management related to seeking/accessing community services and support (n = 148, 23%), the predominant issues included education (n = 96, 65%), independent living (n = 88, 59%), and employment (n = 81, 55%). Sixty-nine percent (n = 102) of these studies, which focused on self-management related to seeking/accessing community services, were grouped into an “other” category. Of these, over half (n = 53, 52%) included outcomes related to social capital, such as social relationships, networks, and activities.

Table 5.

Type of Self-Management Outcome.

Self-Management-Outcome	n	%
Condition management	492	77
Seeking/accessing community services and support	1	< 1
Condition management and seeking/accessing community services and support	147	23

4. Discussion

This scoping review reveals several literature trends and broad evidence perspectives that provide insights and a more comprehensive understanding of the research published on self-management in the context of HCT planning. Unlike other scoping reviews that have examined specific populations of YYA with chronic conditions and their HCT outcomes,34, 35, 36 this scoping review focused on a specific component of HCT planning that explored YYA acquisition of self-management knowledge and skills competencies. This is the first scoping review to map the literature published from 1989 through mid−2025. The findings of this scoping review will provide a profile analysis of the evidence published over nearly forty years, serving as a collective literature template of past research efforts. Importantly, the findings of this scoping review will provide direction and guidance for future investigations,37, 38 identifying areas where research is lacking. The major findings of this review will be discussed pertaining to the publication profiles (i.e., source and type of studies; characteristics of the studies, including research designs, methods, and outcomes) and the examination of the demographic profiles of the research samples in terms of primary diagnoses, age groupings, sex, and race/ethnicity.

Publication Profiles. The conducted studies examining YYAs’ self-management of their chronic condition in the HCT literature span more than 35 years. Relatively few studies on this topic were published between 1989 and 2010, coinciding with the nascent period of this emerging field of practice, as comparatively few studies were published³⁹; scoping reviews examining selected topics pertaining to HCT were not evident until relatively recently, in the 2010 decade,40, 41 nor were HCT guidelines widely disseminated.42, 43, 44, 45 There were few instruments available to measure self-management, and notably, transition-readiness measures that are currently widely reported in this literature were not evident approximately a decade ago.46, 47 The acceleration of publications became evident in the last decade, with annual numbers ranging from 30 to 40 publications, of which 85% of the peer-reviewed articles in this review were published. This marked growth in publications over the past decade reflects the maturation of the HCT field, with greater conceptual clarity, efforts to standardize measurement approaches, and sustained attention to supporting YYAs’ self-management as a core component of transition readiness and outcomes.

Notably, the global publication landscape was primarily generated in the United States, followed by Canada, the United Kingdom, and the Netherlands, all high-resource countries. Although the United States does not have a nationalized system of health care, unlike the other three countries, it was an early leader in policy-making advocating for HCT services in YYA with special health care needs, as evidenced by public policy papers issued thirty years ago (43, 44, 48, 49). Likewise, in three other countries (add which ones), there have been publicly supported efforts to facilitate systemic changes for developing and implementing health care transition services 22, 50, 51, 52. These efforts have contributed to creating an environment that facilitates both clinical practice and research. Notably, HCT efforts that incorporate self-management practices have now achieved a worldwide presence, as evidenced by publications generated from 50 countries, including those with low resources. Few studies have been conducted across country borders, as long-distance collaboration is a significant challenge; however, virtual opportunities exist to facilitate global collaboration. Other barriers to collaboration include differing systems of care, discipline-specific scope-of-practice standards, health care transition standards, and local practices, among others. Together, these patterns reflect what is well established in HCT: that progress in research and implementation has been driven largely by high-resource settings with supportive policy infrastructures, while the growing global distribution of studies underscores an expanding recognition of self-management as a critical component of transition, alongside ongoing challenges in achieving coordinated, cross-national collaboration.

Research designs and methodology. As the findings reveal, most studies employed cross-sectional designs, utilizing either quantitative or qualitative approaches. A major limitation with cross-sectional designs is that causality cannot be determined, which is especially relevant in gathering evidence for service model development and implementation.⁵³ Findings from cross-sectional designs limit the analysis of multifactorial variables that affect both the HCT process and outcomes. As reflected in the studies of this scoping review, the findings provide emerging evidence on a variety of HCT topics, including introductory, preparatory, transfer, and post-transfer phases of HCT, with a focus on selected areas.6, 54, 55

As depicted in Fig. 2, the majority of the studies in this review were published within the last decade. Therefore, given the evolution of HCT investigations, it is understandable that efforts be directed toward collecting longitudinal descriptive data to understand the complex phenomenon of HCT and its predictors (e.g., self-management behaviors). The concept of HCT spans multiple age groups and phases; yet, few have captured all ages. These publications to date have provided preliminary, evolving evidence on the HCT process and its structural components, as well as on self-management. Nevertheless, the growing body of knowledge from these studies has enabled advanced review approaches, such as scoping and systematic reviews, to generate literature syntheses that deepen understanding of the current evidence base and provide direction for advancing the field of research and practice.⁵⁶ To date, self-management and HCT have been examined in only a few systematic reviews. One focused on adolescents with diabetes,⁵⁷ another two examined digital applications58, 59, and a final one, although not focusing specifically on HCT, explored interventions for young people with chronic conditions.⁶⁰ As this scoping review reveals, few intervention studies have examined HCT and self-management. These findings are consistent with what is known about HCT as a developing field, where early reliance on cross-sectional and descriptive designs has provided foundational insights, yet underscores a critical need for more longitudinal and intervention-based research to better capture the complexity of transition processes and inform evidence-based practice.

Sample composition. As evidenced by the findings of this scoping review, youth and young adults were the study participants in nearly every study reviewed, and were primarily sampled before the age of 21, and before transitioning to adult-focused providers. It is worth noting that the age of transfer to adult-focused providers varies internationally, typically 21 in the United States and 18 in Canada, and is also inconsistent across U.S. states.. A minuscule number of studies explored self-management in the post-transfer period. These findings align with what is known about HCT, where research has historically focused on the pre-transfer period, highlighting a persistent gap in understanding self-management and outcomes following transition to adult care.

Age Groupings. As displayed in Table 3, the age groupings of youth samples were most prominent in the 12- to 15-year and 16- to 20-year age ranges, comprising almost half of the studies reviewed. In contrast, older age groups, specifically those aged 21–25 years and 26 years and older, were rarely reported. The age grouping reflects the long-standing emphasis in the field of health care transition practice and research on the pediatric system of care. Research penetration on HCT outcomes post transfer to adult-focused care and transition to adulthood has been limited⁶¹; however, challenges in tracking outcomes long-term are hampered in several countries by a lack of funding for follow-up tracking, re-assignment of agency identifiers, and a lack of formalized linkages between pediatric and adult health care systems. These patterns are consistent with what is known about HCT, where research and practice have predominantly focused on younger age groups within pediatric care, while limited longitudinal follow-up and structural barriers continue to constrain understanding of outcomes in adulthood.

Diagnostic Classifications. The preponderance of studies included in this scoping review was conducted in samples with physical diagnoses (i.e., inflammatory bowel disease, diabetes, sickle cell disease). Few studies examined self-management in transition-aged youth and young adults with IDD and mental/emotional health conditions. This is in stark contrast to the overall number of studies with samples involving YYA with physical diagnoses. Few other scoping reviews have been conducted involving IDD samples,³⁶ such as epilepsy⁶², as well as systematic reviews with IDD samples,63, 64 such as those that focused on diagnosis-specific samples with cerebral palsy⁶⁵, ADHD,⁶⁶ and autism spectrum disorder.⁶⁷ None of these reviews focused exclusively on self-management. Few scoping reviews40, 41 and systematic reviews68, 69, 70 have explored topics of interest in health care transition involving youth and young adults with mental health issues. These reviews highlighted not only the limitations associated with the number of studies reviewed, but also the quality of the studies themselves, which were characterized by design and methodological limitations. Evident gaps exist in the literature on self-management and HCT as it pertains to transition-aged YYA with IDD and mental health issues. These findings reflect a well-recognized pattern in HCT research, where the evidence base is heavily weighted toward physical health conditions, underscoring persistent gaps in attention to self-management among youth and young adults with IDD and mental health conditions, despite their substantial and growing transition needs.

Subsamples. Approximately one-third of investigations explored the phenomenon of self-management from multiple perspectives- that is, from parents, caregivers, or providers. Both the strengths and limitations of self-report have been widely reported, particularly in circumstances in which data are obtained from a single perspective. Although there have been admonitions to include YYA in HCT studies for gathering data that reflects their perspectives, there is cautious acknowledgment of limitations that include respondent bias, problems with memory recall, and developmental issues as well that require attentive consideration by researchers.71, 72 The gathering of data from youth and young adults regarding their self-management knowledge and skills may be influenced by reluctance to be forthcoming about non-adherence behaviors, not fully comprehending the concept query (i.e., meaning of adherence), or understanding the question itself (i.e., about condition management)⁷³. The inclusion of other perspectives from family members and social support networks provides additional insights that align with or differ from YYAs’ views, ultimately enhancing the discovery, clarity, and understanding of the self-management process used during HCT.⁷⁴ These findings align with what is known in HCT, where incorporating multiple perspectives is increasingly recognized as essential to capturing the complexity of self-management, while reliance on single-informant data continues to pose limitations for fully understanding transition experiences and outcomes.

Race and Ethnicity. Race of the YYA was inconsistently reported among the studies reviewed. With the exception of studies conducted in the United States, most investigations did not provide the race or ethnic background of their sample. Two other HCT scoping reviews cited findings pertaining to race. A HCT scoping review of 103 studies³⁶ reported findings from one study⁷⁵ that revealed a significant association between the White race and increased emergency department use, along with several other variables. Another HCT scoping review,³⁴ comprising 271 studies, reported findings from two studies that revealed individuals who identified as Black were at risk for poor HCT outcomes.76, 77 Race and ethnicity were reported in nine systematic reviews (⁷⁸, 5 of 17;⁷⁹ , 5 of 35 studies;,⁶³ 1 of 12;,⁸⁰ 2 of 14;,⁸¹ 1 of 60;,⁸² 7 of 26;,⁸³ 3 of 44;,⁸⁴ 7 of 24;,⁸⁵ 1 of 10). The number of studies reported in these scoping and systematic reviews was fairly limited. Social determinants of health, including race and ethnic background, remain understudied in HCT. Future studies may examine outcomes by groups to understand important predictors of successful transition.⁸⁶ These findings are consistent with what is known about HCT, where the limited and inconsistent reporting of race and ethnicity reflects a broader gap in addressing social determinants of health, thereby constraining the field’s ability to fully understand and address disparities in transition outcomes.

4.1. Recommendations

Based on the findings of this scoping review, the following recommendations are proposed to advance education, practice, policy, and research in health care transition (HCT).

Education. Integrate pediatric-onset chronic diseases into adult healthcare curricula, with efforts focused on strengthening conceptual clarity in health care transition (HCT) and self-management, promoting the use of standardized frameworks and validated measures, and preparing healthcare professionals to deliver developmentally appropriate, longitudinal transition support while building competencies in addressing social determinants of health, cultural responsiveness, and multi-informant approaches.

Practice. Clinical practice should extend beyond its traditional emphasis on pediatric and pre-transfer care to encompass the full continuum of transition, including structured support during and after transfer to adult services. Multidisciplinary, person- and family-centered models should be implemented to better address the complexity of self-management and to ensure care is responsive to diverse populations, including those with intellectual and developmental disabilities and mental health conditions.

Policy. Policies should prioritize the development of integrated systems that support continuity of care across pediatric and adult settings, including mechanisms for long-term outcome tracking. Investment is needed to expand equitable access to HCT services globally, support cross-national collaboration, and standardize the collection of demographic and social determinants of health data to better identify and address disparities.

Research. Future research should emphasize longitudinal and intervention-based designs to strengthen causal inference and understanding of long-term outcomes. There is a critical need to broaden the evidence base to include more diverse populations, particularly those with IDD and mental health conditions, and to expand research beyond high-resource settings. Studies should incorporate multiple perspectives and improve the consistency of reporting on race, ethnicity, and other social determinants to enable more comprehensive and equity-focused analyses.

4.2. Limitations

Consistent with the aim of a scoping review, this review, which determines the extent to which self-management concerning YYA with childhood-onset chronic conditions has been investigated and reported, is valuable for mapping the existing HCT research literature, but it does come with several limitations. A scoping review lacks critical appraisal of the included research and, as a result, may include methodologically weak studies. Additionally, a scoping review does not yield a meta-analysis or meta-synthesis of findings; thus, the effectiveness or level of evidence for HCT outcomes has not been evaluated. Due to this lack of critical appraisal and synthesis, this review, like scoping reviews in general, is not suitable for making direct clinical or policy recommendations. A specific limitation within this scoping review was the need to collapse the breadth of self-management components into two main categories for brevity of this report. Notably, definitions of self-management varied significantly across the included studies in this review, and there was inconsistent use of tools to measure self-management. A future review may focus on how self-management was defined and conceptualized (i.e., multiple skills, abilities, and behaviors) for respective diagnoses in the published HCT literature. Additionally, the lack of consistent classification of intellectual and developmental disorders vs. mental health disorders within the international literature presented difficulty when mapping the literature. Future work would benefit from consensus within the field.

5. Conclusion

Self-management has been widely examined within the healthcare transition literature, with a notable expansion of research over the past decade, much of it originating from U.S.-based investigators. However, despite this growth, the evidence base remains methodologically limited and conceptually fragmented. The majority of studies are descriptive and rely on cross-sectional designs, with relatively few employing longitudinal or interventional approaches capable of establishing causal relationships or evaluating sustained outcomes.

Critical gaps persist across multiple dimensions of the literature. Most notably, there is a significant underrepresentation of youth with intellectual and developmental disabilities and those with mental health conditions, populations for whom self-management is both uniquely complex and highly consequential. This omission represents a substantial limitation in the applicability and equity of the current evidence base. Further, there is limited attention to post-transfer outcomes, constraining understanding of how self-management skills translate into real-world functioning during and after the transition to adult care.

Conceptual and measurement inconsistencies further weaken the field. Definitions of self-management vary widely across studies, and there is no standardized approach to its assessment, limiting comparability and synthesis of findings. Research has also been disproportionately concentrated in populations with physical health conditions, often without attention to condition-specific nuances, thereby obscuring important differences in self-management needs across diagnostic groups.

In addition, the literature demonstrates inadequate attention to populations requiring enhanced support. The consistent under-reporting of racial and ethnic backgrounds limits the ability to identify disparities and understand culturally relevant determinants of successful transition. This lack of demographic granularity undermines efforts to design equitable and targeted interventions.

Importantly, the conceptualization of self-management itself remains narrow. Most studies focus predominantly on condition management, while far fewer incorporate broader domains such as navigating healthcare systems, accessing community resources, and engaging with social supports. This imbalance fails to capture the full scope of competencies required for a successful transition to adulthood.

Advancing the science of self-management in healthcare transition will require a deliberate shift toward more inclusive, methodologically rigorous, and contextually grounded research. This includes prioritizing underrepresented populations, standardizing measurement frameworks, expanding longitudinal and intervention studies, and situating self-management within the lived environments of youth, where they live, work, and participate in their communities. Without addressing these gaps, the field risks perpetuating a narrow, incomplete understanding of self-management and its role in a successful healthcare transition.

CRediT authorship contribution statement

Jennifer Emilie Mannino: Writing – review & editing, Writing – original draft, Visualization, Validation, Resources, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Young Cara C: Writing – review & editing, Writing – original draft, Visualization, Validation, Software, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Ridosh Monique M: Writing – review & editing, Writing – original draft, Validation, Resources, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Kristin Cleverley: Writing – review & editing, Writing – original draft, Validation, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Lin Li: Writing – review & editing, Writing – original draft, Validation, Formal analysis, Data curation. Lynn Kysh: Writing – review & editing, Writing – original draft, Validation, Methodology, Data curation, Conceptualization. Harwood Catherine: Writing – review & editing, Writing – original draft, Validation, Formal analysis, Data curation. Brooke Allemang: Writing – review & editing, Writing – original draft, Formal analysis, Data curation. Linda Tirabassi-Mathis: Writing – review & editing, Writing – original draft, Validation, Formal analysis, Data curation. Sharon Hudson: Writing – review & editing, Writing – original draft, Methodology, Formal analysis, Data curation, Conceptualization. Key Stephanie: Writing – review & editing, Writing – original draft, Formal analysis, Data curation. Schwartzman Benjamin: Writing – review & editing, Writing – original draft, Formal analysis, Data curation. Jihye Lee: Writing – review & editing, Writing – original draft, Formal analysis, Data curation. Raam Manu: Writing – review & editing, Writing – original draft, Formal analysis, Data curation. Cecily L. Betz: Writing – review & editing, Writing – original draft, Supervision, Methodology, Formal analysis, Data curation, Conceptualization.

Ethical Statement

The manuscript is original work, and no part of the manuscript has been published elsewhere for publication. All authors have read and approved this version of the manuscript and its submission to the journal. The development of the submitted manuscript has adhered to ethical standards. The authors contributed to the development of the ideas, writing, and/or final review of the submitted manuscript.

Funding

Monique Ridosh, PhD, RN, FAAN reports financial support was provided by the National Institute of Nursing Research (K01NR018907).

Declaration of Competing Interest

The authors declare the following financial interests/personal relationships, which may be considered potential competing interests. Cecily L. Betz, PhD, RN, FAAN, coauthor of this article and the Editor-in-Chief of Health Care Transitions, has not been involved in the management or review of this article.

Appendix A. Supplementary material

Supplementary material

Data availability

Data will be made available on request.