Social and Structural Drivers of Health and Transition to Adult Care

Bailey, Katherine; Avolio, Julia; Lo, Lisha; Gajaria, Amy; Mooney, Sarah; Greer, Katelyn; Martens, Heather; Tami, Perrine; Pidduck, Jacklynn; Cunningham, Jessie; Munce, Sarah; Toulany, Alene

doi:10.1542/peds.2023-062275

CONTEXT

Youth with chronic health conditions experience challenges during their transition to adult care. Those with marginalized identities likely experience further disparities in care as they navigate structural barriers throughout transition.

OBJECTIVES

This scoping review aims to identify the social and structural drivers of health (SSDOH) associated with outcomes for youth transitioning to adult care, particularly those who experience structural marginalization, including Black, Indigenous, and 2-spirit, lesbian, gay, bisexual, transgender, queer or questioning, and others youth.

DATA SOURCES

Medline, Embase, CINAHL, and PsycINFO were searched from earliest available date to May 2022.

STUDY SELECTION

Two reviewers screened titles and abstracts, followed by full-text. Disagreements were resolved by a third reviewer. Primary research studying the association between SSDOH and transition outcomes were included.

DATA EXTRACTION

SSDOH were subcategorized as social drivers, structural drivers, and demographic characteristics. Transition outcomes were classified into themes. Associations between SSDOH and outcomes were assessed according to their statistical significance and were categorized into significant (P < .05), nonsignificant (P > .05), and unclear significance.

RESULTS

101 studies were included, identifying 12 social drivers (childhood environment, income, education, employment, health literacy, insurance, geographic location, language, immigration, food security, psychosocial stressors, and stigma) and 5 demographic characteristics (race and ethnicity, gender, illness type, illness severity, and comorbidity). No structural drivers were studied. Gender was significantly associated with communication, quality of life, transfer satisfaction, transfer completion, and transfer timing, and race and ethnicity with appointment keeping and transfer completion.

LIMITATIONS

Studies were heterogeneous and a meta-analysis was not possible.

CONCLUSIONS

Gender and race and ethnicity are associated with inequities in transition outcomes. Understanding these associations is crucial in informing transition interventions and mitigating health inequities.

Youth with chronic health conditions often require their care to be transitioned from pediatric to adult services.¹ Transition is associated with adverse health outcomes, including disengagement from care and disease complications.^2–8 Additionally, youth with chronic conditions experience inequities accessing healthcare services compared with their peers, such as disability-related accessibility issues.^9–13 Those with chronic conditions and marginalized identities, including racial, ethnic, and sexual or gender minorities, immigrants and refugees, and those experiencing poverty are likely to experience further disparities in care as they navigate structural barriers during their transition.^11,14–18

The social determinants of health are defined as “the conditions where people are born, grow, live, work, and age,” such as income, education, and geographic location, and contribute to health inequities.^19–23 The structural determinants of health refer to the upstream social, economic, and political mechanisms that generate social inequities and therefore affect health (eg, extent a government finances healthcare).²³ Both social and structural drivers of health (SSDOH) intersect to affect many different aspects of health, including access to healthcare services, morbidity and mortality, and healthcare quality.²⁴ Despite the impact of the SSDOH on health outcomes, research has placed little emphasis on identifying the best practices that promote equity during transition to adult care. In fact, a recent systematic review found none of 169 quality indicators for transition focused on equity and called for further work to ensure equity is embedded in transition interventions and outcome measures moving forward.²⁵

This scoping review aims to identify the association between SSDOH and outcomes for youth transitioning to adult care, particularly for marginalized youth who experience multiple and intersecting forms of inequity. Importantly, this review is done with young adults to ensure accurate analysis and community input, in alignment with the South African disability rights movement’s motto of “Nothing About Us Without Us.”

Methods

The protocol was registered on Open Science Framework (https://doi.org/10.17605/OSF.IO/R78TV).²⁶ Methodology followed the frameworks outlined by the Joanna Briggs Institute, and data reporting followed the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols Extension for Scoping Reviews (PRISMA-ScR) checklist.^27–29 A scoping review was chosen to clarify concepts in the literature, examine how research is conducted on this topic, and identify key factors.^30,31 Three young adults with lived experience were involved as team members and informed the research question and study design, as well as reviewed the analysis to ensure it reflects their lived experience. As the research team includes many clinical and nonclinical researchers without lived experience in transition to adult care, we were committed to collaborating with young adults as key members of the research team, recognizing the limits of nonexperiential understanding in the interpretation of findings and applications to the broader community.

Search Strategy

Databases Medline, CINAHL, Embase, and PsycINFO were searched from earliest available date to May 2022 (Appendix A in the Supplemental Information). The search strategy combined “transition to adult care” and “health equity” terms developed by a librarian (J.C.). Reference lists of included studies were screened for relevant articles.

Eligibility Criteria

Original, peer-reviewed studies focusing on youth during transition to adult care and SSDOH were included (Appendix B for SSDOH definition). No participant age range was specified. Studies from any country were included and there were no restrictions based on study design. Studies were limited to those reported in English because of capacity constraints, however articles from countries where English is not a primary language were included. Commentaries, abstracts, and original studies reporting demographic characteristics without further analyses related to transition outcomes, were excluded. Titles and abstracts were screened by 2 sets of 2 reviewers (K.B. and L.L., κ = 0.699; K.B. and J.A., κ = 0.864). Two independent reviewers conducted a full-text review (K.B. and L.L., κ = 0.844). Disagreements were resolved by a third reviewer (A.T.).

Data Abstraction and Synthesis

Studies meeting eligibility criteria underwent data abstraction. Data were abstracted by 2 independent reviewers and abstraction forms were collated (K.B. and J.A.). Abstraction categories included study characteristics (ie, year, country, objective), youth characteristics (ie, age range, number of participants, health condition, percentage of Black, Indigenous, and 2SLGBTQ+ youth), and data on SSDOH and transition outcomes. Transition outcomes were organized according to the themes previously outlined in a recent systematic review by Bailey et al (2022), which identified clinically-relevant themes to categorize transition outcomes.²⁵ Associations between SSDOH and transition outcomes were categorized as significant (ie, all studies showed significant association between SSDOH and outcome; P < .05), nonsignificant (ie, all studies showed no significant association between SSDOH and outcome; P > .05), or unclear (ie, some studies showed a significant association and some showed a nonsignificant association).

Definition Clarifications

SSDOH definition included demographic characteristics (eg, gender, race), recognizing that discrimination and structural inequities contribute to poor health outcomes, rather than demographic characteristics themselves.^32–34 Additionally, race and ethnicity data were reported as “race and ethnicity” in included articles; however, we will separate the terms race and ethnicity in our discussion, recognizing that these are collective terms with many subcategories.³⁵ Finally, although many studies report gender data as “sex,” the term “gender” was used as we are unable to ascertain whether participants reported on sex assigned at birth, current gender identity, or gender presentation.³⁶ All race, ethnicity, gender, and sexual identity data were self-reported by youth and/or their caregivers.

Results

Study Characteristics and Population

A total of 101 studies met inclusion criteria (Fig 1), of which 58 (57%) were cross-sectional, 7 (6.9%) retrospective cohort, 4 (4.0%) longitudinal observational, and 3 (3.0%) mixed qualitative and quantitative methods. Six reviews were identified, including 4 (4.0%) systematic reviews, 1 (1.0%) scoping review, and 1 (1.0%) narrative review. Study characteristics are displayed in Table 1. Sample sizes ranged from 20 to 60 223 participants. Eighty-five studies included only youth (84%) as participants and 5 (5.0%) included both youth and parents and caregivers. Five (5.0%) studies were conducted with only parents and caregivers, who answered study questions on behalf of youth.

FIGURE 1

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PRISMA flow diagram for studies included in the scoping review. ^a Off-topic category included studies that were not about AYA as population of interest and did not mention transitions or transfers of care. ^b Healthcare transitions in paediatrics but not in transition to adult care category included studies evaluating transfers between wards, discharges, handovers, etc. ^c Transition to adult care but not within scope of study (ie, did not study the association between SSDOH and transition outcomes). ^d Not indicated in research aim, hypothesis, or research questions. ^e Includes abstracts only and non-peered reviewed research (eg, dissertations).

TABLE 1

Summary of 101 Studies Included in Scoping Review

Source	Study Design	Country	Age Range (years)	Sample Size	Illness Category	Sample Characteristics	Black, Indigenous, and 2SLGBTQ+ (%)	SSDOH	Transition Outcome(s)
Allen et al (2022)⁹²	Quality improvement needs assessment	USA	13–34 (AYA), 41–65 (P/C)	89 AYA, 37 P/C	Physical illness	AYA with neurofibromatosis 1, primary immune-deficiency, cancer, and sickle cell disease and their P/C	Black (AYA 30.3%; P/G 8.1%), Indigenous (AYA 3.4%; P/G 2.7%), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity	1. Transition information and service needs
Patel et al (2022)⁹³	Prospective cross-sectional study	USA	12–25	35 AYA, 30 P/C	Physical illness	Turner syndrome	Black (AYA 14%; P/G 20%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. household composition, 4. employment, 3. education level, 5. SES, 6. comorbid behavioral, mental health and/or neurodevelopmental condition	1. Transition readiness
Prussien et al (2022)⁴⁸	Cross-sectional study	USA	15–29	195 AYA	Physical illness	AYA survivors of childhood cancer	Black (6.2%), Indigenous (0%)^a, 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. primary caregiver education, 3. insurance type, 4. neighborhood income	1. Transition beliefs, expectations, and goals
Teh et al (2022)⁹⁴	Cross-sectional study	Singapore	NR	152 AYA	Physical illness	AYA with rheumatic disease	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender^b	1. Transition readiness
Verlenden et al (2022)⁹⁵	Cross-sectional study	USA	18–30	15 697 AYA	Developmental condition	AYA with and without disabilities	Black (13.3%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Presence of disability	1. Healthcare service utilization, 2. unmet need and satisfaction, 3. financial worry
Bitencourt et al (2021)⁵²	Retrospective cross-sectional study	USA	17+	190 AYA	Physical illness	AYA with childhood-onset systemic lupus erythematosus	Black (35%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. Insurance, 3. household median income, 4. contact with child protection services, 5. gender	1. End-stage renal disease or death, 2. time to first hospitalization
Chisolm et al (2021)⁹⁶	Cross-sectional study	USA	12–18	417 AYA	NR	AYA with special healthcare needs	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Health literacy, 2. race and ethnicity, 3. Gender, 4. caregiver education, 5. place of residence	1. Transition readiness, 2. healthcare utilization
Harris et al (2021)⁹⁷	Retrospective cohort study	USA	13–24	103 AYA	Physical illness	HIV	Black (100%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. chronic comorbidities, 3. mental health condition	1. Transition readiness
Ilango et al (2021)⁹⁸	Cross-sectional study	USA	12–17	29 617 AYA	NR	AYA with and without special healthcare needs	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR),	1. Presence/absence of special healthcare needs	1. Healthcare transition preparation, 2. transition discussion between HCP and AYA, 3. HCP worked with AYA to develop skills, 4. AYA saw HCP alone before transition, 5. family partnership in decision-making, 6. AYA has medical home, 7. continuous health insurance, 8. access to community-based services
Johnson et al (2021)⁹⁹	Systematic review	USA	NA	16 articles included in analysis	Physical illness	AYA with inflammatory bowel disease	NA	1. Gender, 2. race and ethnicity, 3. socioeconomic status, 4. education level, 5. illness type	1. Transition readiness
Katz et al (2021)⁵¹	Retrospective review	USA	>21	101 AYA	Physical illness	Pediatric liver transplant recipients	Black (42.2%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Race and ethnicity	1. Mortality, 2. retransplantation
McColl et al (2021)¹⁰⁰	Cross-sectional study	Canada	14–20	70 AYA	Physical illness	AYA with juvenile idiopathic arthritis (JIA) and childhood-onset systemic lupus erythematosus (cSLE)	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. JIA versus cSLE^b	1. Transition readiness
Nip et al (2021)¹⁰¹	Retrospective cohort study	USA	13–24	38 053 AYA	Physical illness	Type 1 and type 2 diabetes mellitus (T1D, T2D)	Black T1D youth = 14.2%, T1D young adults = 15.6%; T2D youth = 11.9%, T2D young adults = 18.2%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. income, 3. insurance	1. Annualized diabetes-related hospitalization rate
Perry Caldwell et al (2021)¹⁰²	Cross-sectional descriptive exploratory study	USA	NR	239 AYA	Physical illness	AYA with and without sickle cell disease	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Household income, 2. presence or absence of sickle cell disease, 3. P/C level of education	1. Health literacy
Pundyk et al (2021)¹⁰³	Prospective population-based cohort study	Canada	16+	652 AYA	Physical illness	AYA with type 1 and 2 diabetes mellitus	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. geographic location, 3. SES, 4. education level	1. Transition success (4+ visits in 2 y after transition)
Rague et al (2021)¹⁰⁴	Cross-sectional study	USA	12–31	200 AYA	Physical illness	AYA with spina bifida	Black (11.5%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Health literacy, 2. race and ethnicity, 3. Insurance, 4. Gender, 5. level of education	1. Transition readiness
Smith et al (2021)¹⁰⁵	Cross-sectional study	USA	13–25	82 AYA	Physical illness	AYA with epilepsy	Black (6.1%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. Gender, 3. income	1. Transition readiness
Sritharan et al (2021)⁵³	Retrospective audit	Australia	16–25	220 AYA	Physical and mental illness	AYA with diabetes +/− comorbid mental health conditions who attend a local diabetes transition clinic	Black (NR), Indigenous (2.7%), 2SLGBTQ+ (NR)	1. Type 1 vs. type 2 diabetes, 2. race and ethnicity (indigenous), 3. Gender, 4. comorbid mental health condition	1. Health status (HbA1c level, hospitalizations associated with DKA, long-term complications)
Wright et al (2021)¹⁰⁶	Mixed methods (qualitative and quantitative interviews)	USA	NR	119 AYA	NR	AYA with 1–5 chronic medical conditions	Black (6.1%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. number of chronic comorbidities	1. Link to primary care provider, 2. link to specialty care provider, 3. hospitalizations, 4. emergency visits, 5. having copy of medical records, 6. taking their medication, 7. running out of medication
Zuar et al (2021)¹⁰⁷	Prospective cohort study	USA	16–22	69 AYA	Physical illness	AYA with inflammatory bowel disease	Black (4.76%), Indigenous (0%), 2SLGBTQ+ (NR)	1. Gender, 2. education	1. Transition readiness, 2. self-efficacy
Gaydos et al (2020)⁴⁷	Cross-sectional study	USA	11–19	451 P/C	Physical illness	P/C of AYA with congenital heart defects	Black (18.7%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Education, 2. insurance, 3. disease severity	1. Health-related quality of life
Heron et al (2020)¹⁰⁸	Cross-sectional study	USA	12–17	5862 AYA	NR	AYA with special healthcare needs	Black (15.8%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. comorbid disability (ADHD or ASD)	1. Transition discussions with HCP, 2. HCP/AYA/ caregiver interactions
Kennedy et al (2020)¹⁰⁹	Cross-sectional study	Canada	NR	48 AYA	Physical illness	AYA living with HIV	Black (40%), Indigenous (13%), 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. foster care, 3. group home, 4. contact with child protection services, 5. household income, 6. comorbid mental health diagnosis	1. Transition preparedness, 2. perception of adult HIV care
Leeb et al (2020)¹¹⁰	Cross-sectional study	USA	12–17	29 286 AYA	Mental and developmental condition	AYA with behavioral (ADHD, conduct disorder, Tourette syndrome), emotional (anxiety, depression), and developmental disorders (ASD, learning disability, intellectual disability, developmental delay, speech and language disorder)	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Presence or absence of behavioral, emotional, and/or developmental disorder	1. Transition planning with HCP, 2. time alone with HCP, 3. HCP worked with AYA, 4. HCP discussed transition with AYA
Varty et al (2020)	Systematic review	USA	NR	33 articles included in analysis	NR	AYA with chronic conditions	NA	1. Gender, 2. median household income, 3. household structure, 4. insurance type, 5. health literacy	1. Transition readiness
Zhong et al (2020)³⁷	Cross-sectional study	USA	12–29	59 AYA	Physical illness	AYA with chronic kidney disease or hypertension	Black (28.8%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Health literacy, 2. race and ethnicity, 3. insurance, 4. gender, 5. intersection between race and health literacy, 5. intersection between gender and health literacy, 6. intersection between insurance and health literacy, 7. intersection between illness and health literacy	1. Transition readiness, 2. disease knowledge, 3. self-management, 4. communication with HCP
Lazaroff et al (2019)¹¹¹	Cross-sectional study	USA	17–21	91 AYA, 54 P/C	Physical illness	AYA with rheumatic disease and their P/C	Black (12.4% AYA, 5.8% PC), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender	1. Transition readiness
Leavey et al (2019)¹¹²	Retrospective chart review	UK	NR	373 AYA	Mental illness	AYA eligible to transfer to adult mental health services	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. education and employment	1. Referral from child or adolescent services to adult mental health services
Berquist McKenzie et al (2019)¹¹³	Cross-sectional study	USA	12–18	17 114 AYA	NR	AYA with special healthcare needs	Black (14.0%), Indigenous (NR)^a, 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. language, 3. education, 4. household income, 5. insurance status, 6. comorbidity, 7. medical complexity, 8. gender	1. HCP discussed shift to adult provider, 2. HCP discussed adult healthcare needs, 3. anyone discussed healthcare insurance, 4. HCP usually or always encourages AYA to take responsibility when needed, 5. AYA receives services necessary to transition to adult care
Baca et al (2018)¹¹⁴	Prospective community-based study	USA	18–36	308 AYA	Physical illness	AYA with epilepsy	Black (11.7%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender^b, 2. race and ethnicity^b, 3. education^b, 4. insurance^b, 5. comorbidity^b8. chronic condition	1. Transition discussion
Crowley et al (2018)¹¹⁵	Retrospective cohort study	USA	NR	133 AYA	Physical illness	AYA with cystic fibrosis who have transitioned to adult care	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Social complexity, 2. medical complexity	1. Hospitalizations pretransfer, 2. hospitalizations posttransfer, 3. outpatient visits pretransfer, 4. outpatient visits posttransfer
Lebrun-Harris et al (2018)⁷²	Cross-sectional study	USA	12–17	20 708 AYA	NR	AYA with and without special healthcare needs	Black (13.7%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. insurance type, 4. household education level, 5. household poverty level	1. AYA received services to make the transition to adult care, 2. HCP discussed shift to adult provider when needed, 3. HCP actively worked with AYA to gain skills and understand changes to healthcare, 4. AYA had time alone with HCP at last preventative check-up
Nugent et al (2018)⁶⁶	Cross-sectional study	USA	12–17	17 114 AYA	Developmental condition	AYA with Down syndrome	Black (13.8%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. insurance, 4. comorbidity	Discussion with provider about: 1. shifting to adult provider, 2. adult healthcare needs, 3. maintaining health insurance coverage, 4. increasing responsibility for self-care
Tanner et al (2018)⁷³	Mixed methods	USA	21–24	132 AYA	Physical illness	AYA living with HIV	Black (78%), Indigenous (NR), 2SLGBTQ+ (62.9% gay/lesbian; 13.6% bisexual; 2.3% questioning)	1. Gender, 2. race and ethnicity, 3. insurance, 4. disclosure-related stigma	1. Transition success
Toth et al (2018)¹¹⁶	Cross-sectional study	Cambodia	15–17	328 AYA	Physical illness	AYA living with HIV	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender^b, 2. education, 3. socioeconomic status, 4. housing, 5. stigma	1. Preparedness for transition
Alassaf et al (2017)¹¹⁷	Retrospective study	Canada	NR	102 AYA	Physical illness	AYA with type 1 diabetes mellitus	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. presence of comorbidity, 3. level of education	1. Frequency of diabetes-related adult hospital visits for hyperglycemia, 2. frequency of diabetes-related adult hospital visits for hypoglycemia, 3. difference in mean hba1c from pre to posttransfer to adult care
Barr et al (2017)¹¹⁸	Systematic review	Canada	NA	5 articles included for analysis	Mental illness	AYA with mental health conditions	NA	1. Insurance coverage, 2. employment	NA
Castensoe Seidenfaden et al (2017)¹¹⁹	Retrospective cohort study	Denmark	14–22	126 AYA	Physical illness	AYA with type 1 diabetes mellitus	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. comorbidity, 3. presence of learning disability and/or mental health condition, 4. divorced parents	1. Diabetes-related hospital admissions, 2. HbA1c level
Judd et al (2017)¹²⁰	Cohort study	UK and Ireland	>13	1215 AYA	Physical illness	AYA with perinatal HIV	Black (80%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. gender, 3. immigrant	1. CD4 count change during transition to adult care
Lolekha et al (2017)¹²¹	Pre and postprogram intervention	Thailand	14–22	161 AYA	Physical illness	AYA with HIV	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. occupation, 3. education level, 4. literacy, 5. household composition, 6. parent status, 7. monthly household income	1. Health-related knowledge score >95%
Miller et al (2017)¹²²	Cross-sectional study	USA	15–25	193 AYA	Physical illness	Childhood cancer survivors	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. ethnicity, 3. health insurance	1. Health-related self-efficacy
Mitchell et al (2017)¹²³	Retrospective cohort study	Australia	17–21	18 AYA	Physical illness	Pediatric liver transplant recipients	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. comorbid psychological disorder	1. Clinic attendance/compliance
Morsa et al (2017)¹²⁴	Scoping review	France	NA	20 articles included for analysis	NR	AYA with any chronic health condition	NA	1. Gender, 2. social level, 3. education level, 4. employment level, 5. incapacity level	NA
Perera et al (2017)¹²⁵	Pilot study	Australia	16–25	245 AYA	Mental illness	Youth transitioning from child or adolescent to adult mental health services	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Discharge diagnosis, 2. housing	1. Referral to adult mental health services, 2. delay in engagement with adult mental health services
Sawicki et al (2017)¹⁷	Cross-sectional study	USA	16–17	1355 AYA	NR	Youth with chronic illness transferring to adult care	Black (24% health plan 1; 18% health plan 2), Indigenous (0.3% health plan 1; 0.4% health plan 2), 2SLGBTQ+ (NR)	1. Gender^b, 2. chronic condition^b, 3. insurance type	1. Transition self-management counseling, 2. prescription medication counseling, 3. transfer planning
Walsh et al (2017)¹²⁶	Cross-sectional study	USA	12–17	1125 AYA and P/C	Developmental condition	AYA with autism spectrum disorder (autism, Asperger’s disorder, pervasive developmental disorder, or other)	Black (11.0%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. ASD symptom severity, 4. insurance coverage, 5. poverty level	1. Transition discussion, 2. discussion of adult healthcare needs, 3. discussion of healthcare insurance, 4. encourage AYA to take responsibility for healthcare needs
Beal et al (2016)¹²⁷	Cross-sectional study	USA	12–22	163 AYA	Physical and developmental condition	AYA with type 1 diabetes, Turner syndrome, spina bifida, and autism spectrum disorder	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender^b, 2. ethnicity^b, 3. parent education level^b, 4. household composition^b, 5. health literacy^b	1. Transition readiness (via TRAQ), 2. perceived readiness to transition responsibility to AYA, 3. perceived importance of transitioning responsibility to AYA, 4. perceived confidence in transitioning responsibility to AYA, 5. transition readiness (via RTQ-T), 6. transfer importance (via RTQ-T), 7. transfer confidence (via RTQ-T)
Javalkar et al (2016)⁵⁰	Cross-sectional study	USA	12–31	511 AYA	NR	AYA diagnosed with chronic condition	Black (42%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. diagnosis type, 4. household income, 5. English-speaking	1. Knowledge of condition, 2. knowledge of medications, 3. adherence, 4. knowledge of insurance, 5. knowledge about ongoing support, 6. overall transition readiness
Kuhlthau et al (2016)¹²⁸	Cross-sectional study	USA	13–26	183 P/C	Developmental condition	P/C of AYA with autism spectrum disorder	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. ASD severity, 2. caregiver depression	1. Rate of transition service receipt
Son et al (2016)¹²⁹	Cohort study	USA	<18	50 AYA	Physical illness	AYA with systemic lupus erythematosus	Black (22%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. education level, 3. median annual household income, 4. anxiety or depression diagnosis	1. Time between pediatric and adult care, 2. gaps in care, 3. unscheduled acute care utilization, 4. missed appointments
Syed et al (2016)¹³⁰	Cross-sectional study	Canada	15–19	184 AYA	Physical illness	Adolescent cancer survivors	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. parent marital status	1. Self-management skills
Suris et al (2016)¹³¹	Cross-sectional study	Switzerland	NR	72 P/C	NR	P/C of AYA with chronic illness who have transferred to adult care	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. SES, 2. parent employment status	1. Ease of transfer process
Weijsenfeld et al (2016)¹³²	Longitudinal study	Netherlands	21–26	59 AYA	Physical illness	AYA with HIV	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. birth region, 3. Education, 4. Employment, 5. family composition, 6. SES	1. Virological failure
While et al (2016)³⁸	Cross-sectional study	Ireland	13–26	217 AYA	Physical illness	AYA with congenital heart disease, cystic fibrosis, diabetes	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. disease type	1. Health-related quality of life
Bingham et al (2015)¹³³	Cross-sectional study	USA	12–21	76 AYA	Physical illness	AYA with rheumatologic conditions	Black (4%), Indigenous (2%), 2SLGBTQ+ (NR)	1. Gender^b, 2. race and ethnicity^b, 3. household education^b, 4. comorbid disease type, 5. living arrangement^b, 6. employment	1. Calls doctor independently, 2. calls pharmacist independently, 3. makes routine appointments independently, 4. cancels appointments independently, 5. remembers to take medications independently
Geerlings et al (2015)¹³⁴	Cross-sectional study	Netherlands	15–25	138 AYA	Physical illness	AYA with epilepsy	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. living arrangement, 3. unsupportive family environment	1. Risk of poor psychosocial outcomes following transition to adult care
Gray et al (2015)¹³⁵	Cross-sectional study	USA	16–25	195 AYA	Physical illness	AYA with inflammatory bowel disease	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. illness type	1. Transition readiness
Mann et al (2015)⁴²	Cross-sectional study	USA	15–24	695 AYA	Physical illness	AYA with spina bifida	Black (31.5%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. gender, 3. residential area, 4. access to nutrition support program	1. Incidence of all acute care visits (emergency department and inpatient), 2. Incidence of emergency department visits, 3. Incidence of inpatient stays
Milam et al (2015)⁴⁵	Longitudinal study	USA	15+	193 AYA	Physical illness	AYA survivors of childhood cancer	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. education^b, 4. health insurance, 5. comorbid depressive symptoms	1. Health care visit related to cancer in last 2 y, 2. intention of attending a cancer follow-up visit in the next 2 y
Strickland et al (2015)¹³⁶	Population-based study	USA	<18	40 242 AYA	NR	AYA with special healthcare needs	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. language, 4. geographic location, 5. family income	1. Effective transition planning for adult healthcare
Williams et al (2015)¹³⁷	Cross-sectional study	USA	NR	37 AYA	Physical illness	AYA with sickle cell disease	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR),	1. Gender, 2. geographic location	1. Transition knowledge, 2. disease knowledge, 3. healthcare system knowledge, 4. transition self-efficacy
Wisk et al (2015)⁴¹	Retrospective cohort study	USA	16–26	60 233 AYA	NA	Adolescents attending a pediatric-focused PCP for preventative care	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. chronic condition, 3. neighborhood poverty	1. Transfer timing to adult-focused PCP, 2. transfer gap between pediatric- to adult-focused PCP, 3. predicted age at transfer, 4. predicted gap length
Aratani et al (2014)⁴³	Cross-sectional study	USA	17–24	33 588 AYA	Mental illness	AYA with mental health needs	Black (9%), Indigenous (<1%), 2SLGBTQ+ (NR)	1. Intersection between gender and race and ethnicity, 2. county of residence, 3. insurance status, 4. mental health diagnosis	1. Return visit to emergency services after first visit for a psychiatric episode
Cheak-Zamora et al (2014)¹³⁸	Cross-sectional study	USA	12–17	101 P/C	Developmental condition	P/C of AYA with ASD	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender^b, 2. race and ethnicity^b, 3. maternal education, 4. family structure 5. family income^b, 6. insurance status, 7. geographic location, 8. financial problems^b, 9. condition type	1. Transition discussion, 2. discussion about change in adult healthcare needs, 3. discussion about insurance coverage, 4. encourage AYA to take responsibility for healthcare needs
Cooper et al (2014)¹³⁹	Population-based cohort study	Australia	18–38	1309 AYA	Physical illness	AYA with type 1 diabetes	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. socioeconomic background level	1. Early adulthood all-cause mortality
Javalkar et al (2014)⁴⁴	Cross-sectional study	USA	13–21	52 AYA	Physical illness	Chronic kidney disease	Black (50%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. insurance status, 4. parent education level	1. Healthcare utilization, 2. readiness for self-management and transition, 3. medication adherence
Lulu et al (2014)¹⁴⁰	Prospective cross-sectional study	USA	12–23	30 AYA	Physical illness	Multiple sclerosis	Black (7%), Indigenous (0%), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. SES	1. Nonadherence with disease-modifying therapy
Pyatak et al (2014)¹⁴¹	Mixed-methods	USA	NR	20 AYA	Physical illness	Type 1 diabetes	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Psychosocial stressors	1. HbA1c level, 2. months since last physician visit, 3. emergency department visits
Van Staa et al (2014)³⁹	Longitudinal study	Netherlands	18–25	518 AYA	NR	AYA with chronic conditions	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. educational level, 3. disability benefits	1. Self-efficacy, 2. satisfaction with transition to adult care
Cheak-Zamora et al (2013)¹⁴²	Cross-sectional study	USA	12–17	40 723 AYA	Developmental condition	AYA with autism spectrum disorder (ASD) and other special healthcare needs (OSHCN)	Black (17.1% with ASD; 15.2% OSHCN), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. financial issues, 4. developmental disability, 5. mental health condition, 6. physical health condition, 7. Multimorbidity, 8. poverty level, 9. education level, 10. insurance coverage	1. Receipt of healthcare services among AYA with autism spectrum disorder
Gurvitz et al (2013)¹⁴³	Cross-sectional study	USA	18+	922 AYA	Physical illness	AYA with congenital heart disease who have transferred to adult care	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender^b, 2. race and ethnicity^b, 3. education level^b, 4. clinic location, 5. disease complexity	1. Gap in care
Knapp et al (2013)¹⁴⁴	Cross-sectional study	USA	15–18	376 AYA and P/C	NR	AYA with special healthcare needs and their P/C	Black (40%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. parent education level	1. Amount of transition planning
Lotstein et al (2013)¹⁴⁵	Cohort study	USA	18+	185 AYA	Physical illness	AYA with diabetes	Black (10%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. insurance status, 4. parent education level, 5. comorbid condition	1. Successfully leaving pediatric care, 2. glycemic control after transition
McManus et al (2013)⁶⁷	National cross-sectional study	USA	12–18	17 114 P/C	NR	AYA with special healthcare needs	Black (14.0%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. primary language, 4. poverty status, 5. condition type, 6. insurance status	1. Discussion of shift to adult provider, 2. discussion of adult healthcare needs, 3. discussion of health insurance, 4. encouraged to take responsibility, 5. received transition services
Okumura et al (2013)¹⁴⁶	Cross-sectional study	USA	19–23	1865 AYA	NR	AYA with special healthcare needs	Black (7.6% in 2001; 4.6% in 2007), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. condition severity, 3. insurance status	1. Worsening health status
Huang et al (2012)⁴⁶	Cross-sectional study	USA	≥10	74 AYA	Physical illness	AYA with inflammatory bowel disease	Black (10.8%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. gender, 3. insurance coverage	1. Functional health literacy, 2. disease knowledge, 3. self-efficacy, 4. knowledge of past medical history
Garvey et al (2012)¹⁴⁷	Cross-sectional study	USA	22–30	258 AYA	Physical illness	AYA with type 1 diabetes	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. education, 3. employment^b, 4. insurance status, 5. comorbidities	1. Gap > 6 mo between pediatric and adult care, 2. percent change in HbA1c posttransition
Richmond et al (2012)⁴⁰	Cross-sectional study	USA	12–17	7774 AYA	NR	AYA with special healthcare needs	Black (11.5%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. emotional, developmental, behavioral problem, 4. household education, 5. Income, 6. health insurance, 7. geographic location, 8. intersectional	1. Medical home transition
Goudie et al (2011)⁴⁹	Population-based cross-sectional study	USA	13–26	1768 AYA	NR	AYA with special healthcare needs	Black (14.2% children cohort; 10.3% young adult cohort), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. household income, 4. insurance status	1. Delayed or foregone care; 2. problems getting care, 3. unfulfilled prescriptions because of cost
Fishman et al (2011)¹⁴⁸	Cross-sectional study	USA	NR	294 AYA	Physical illness	AYA with inflammatory bowel disease	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender	1. Knowledge of medication side effects
Mutze et al (2011)¹⁴⁹	Cross-sectional study	Germany	19–41	72 AYA	Physical illness	AYA with phenylketonuria	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender^b, 2. AYA education level	1. Tyrosine concentration, 2. phenylalanine concentration
Nishikawa et al (2011)¹⁵⁰	Cross-sectional study	USA	12–17	18 198 AYA	NR	AYA with special healthcare needs	Black (16.0%), Indigenous (NR), 2SLGBTQ+ (NR),	1. Gender, 2. race and ethnicity, 3. parent education level, 4. household income, 5. health insurance	1. Adult health care discussion, 2. adult insurance discussion, 3. encouraged to take responsibility for health
Pai et al (2011)¹⁵¹	Scoping review	USA	NA	12 articles included for analysis	NR	AYA with any chronic health condition	NA	1. Comorbid mental health conditions, 2. insurance status	NA
Sawicki et al (2011)¹⁵²	Cross-sectional study	USA	19–23	1865 AYA	NR	AYA with special healthcare needs	Black (NR), Indigenous (NR), SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. Income, 4. AYA education level, 5. parent education level, 6. insurance status, 7. disability	1. HCP discussed adult healthcare needs, 2. HCP discussed how to obtain health insurance as an adult
Lotstein et al (2010)⁵⁴	Narrative review	USA	NA	NR	NR	AYA with special healthcare needs	NA	1. Race and ethnicity	NA
Perry et al (2010)¹⁵³	Case note audit	Australia	18–28	239 AYA	Physical illness	AYA with type 1 diabetes	Black (NR), Indigenous (4.2%), 2SLGBTQ+ (NR)	1. Geographic location	1. Unplanned hypoglycemic episodes requiring assistance, 2. unplanned hospital admission, 3. unplanned emergency department visits, 4. planned consult with doctor, 5. planned consult with nurse educator, 6. planned consult with dietitian, 7. retinal assessment, 8. renal function assessment, 9. foot check, 10. missed 1+ appointments, 11. blood pressure control, 12. BMI control, 13. HbA1c control
Van den Heuvel et al (2010)¹⁵⁴	Historical cohort study	Netherlands	14–22	162 AYA	Physical illness	Pediatric kidney transplant recipients	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. immigration status	1. Risk of acute kidney rejection, 2. risk of graft failure, 3. risk of chronic kidney rejection
Williams et al (2010)¹⁵⁵	Cross-sectional study	Canada	11–19	49 AYA	NR	AYA with special healthcare needs from a neurology clinic and transition program	Black (2.0%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender^b, 2. parent education level, 3. race and ethnicity^b	1. Self-management
Bergstrom et al (2009)¹⁵⁶	Prospective study	Sweden	16–21	150 AYA	Physical illness	AYA with asthma	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender	1. Lung function
Devernay et al (2009)¹⁵⁷	Cross-sectional study	France	18–31	568 AYA	Physical illness	AYA with Turner Syndrome	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. AYA education level, 2. paternal socio-professional class, 3. AYA socio-professional class^b	1. Adequate lipid level follow-up (F/U), 2. adequate blood pressure F/U, 3. adequate blood glucose F/U, 4. adequate thyroid hormone F/U, 5. adequate liver enzyme F/U, 6. adequate audiometry F/U, 7. adequate echocardiogram F/U
Lotstein et al (2009)⁶⁸	Cross-sectional study	USA	12–17	18 198 AYA	NR	AYA with special healthcare needs	Black (15.5%), Indigenous (NR)^a, 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. primary language, 4. income level, 5. insurance coverage	1. Discussed shift to adult provider with HCP, 2. discussed adult healthcare needs with HCP, 3. discussed health insurance, 4. HCP encouraged AYA to take responsibility, 5. received services necessary to transition
Nakhla et al (2009)⁷⁹	Retrospective cohort study	Canada	<20	1507 AYA	Physical illness	AYA with diabetes mellitus	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. income	1. Diabetes-related hospitalizations after transition to adult care, 2. eye care visit within 2 y after transition to adult care
Lotstein et al (2008)¹⁵⁸	Cross-sectional study	USA	21–24	77 AYA	NR	AYA with special healthcare needs	Black (13%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. AYA education level, 4. comorbid condition, 5. comorbid mental health condition, 6. receives supplemental security income	1. 1+ adverse transition event (ie, no usual source of care, foregone care, uninsured, gap in insurance)
Newland et al (2008)¹⁵⁹	Descriptive correlational study	USA	14–21	74 AYA	Physical illness	AYA with sickle cell disease	Black (98.5%), Indigenous NR, 2SLGBTQ+ (NR)	1. Gender	1. Transition knowledge, 2. autonomy, 3. severity of disease
Scal et al (2008)¹⁶⁰	Cross-sectional study	USA	12–24	2372 AYA	Physical illness	AYA with asthma	Black (18.3% adolescents; % 14.4% young adults), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. insurance status, 4. poverty status	1. Delayed care because of financial barriers, 2. unmet needs because of financial barriers, 3. delayed care because of nonfinancial barriers
Callahan et al (2007)¹⁶¹	Cross-sectional study	USA	16–25	5170 AYA	Developmental condition	AYA with and without disabilities	Black (16.9% reported disability; 12.8% no reported disability), Indigenous (NR), 2SLGBTQ+ (NR)	1. Disability status	1. Health insurance coverage, 2. months of uninsurance following transition to adult care
Callahan et al (2006)¹⁶²	Cross-sectional study	USA	19–29	1109 AYA with chronic condition; 22 481 without chronic condition	NR	AYA with disabling chronic conditions, defined as a physical, mental, or emotional problem causing functional impairment	Black (15.3% reported chronic condition; 13.4% no reported chronic condition), Indigenous (NR), 2SLGBTQ+ (NR)	1. Intersecting disabling chronic condition and insurance status	1. Delated medical care because of cost, 2. did not get medical care because of cost, 3. could not afford to fill prescriptions, 4. no contact with HCP in past year, 5. no usual source of care
Anie et al (2005)¹⁶³	Cross-sectional study	UK, USA	14+	224 AYA	Physical illness	AYA with sickle cell disease	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. AYA education level	1. Self-efficacy, 2. self-management
Lotstein et al (2005)¹⁶⁴	Cross-sectional study	USA	13–17	5533 AYA	NR	AYA with special healthcare needs	Black (9.8%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. Gender, 3. income level, 4. type of insurance	1. HCP discussed changing needs in adulthood, 2. AYA has plan for addressing changing needs, 3. HCP discussed shift to adult provider
Scal et al (2005)¹⁶⁵	Cross-sectional study	USA	14–17	4332 AYA	NR	AYA with special healthcare needs	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. Gender, 3. parental education, 4. family poverty status, 5. insurance status, 6. severity of health condition	1. Adequacy of healthcare transition services

Source	Study Design	Country	Age Range (years)	Sample Size	Illness Category	Sample Characteristics	Black, Indigenous, and 2SLGBTQ+ (%)	SSDOH	Transition Outcome(s)
Allen et al (2022)⁹²	Quality improvement needs assessment	USA	13–34 (AYA), 41–65 (P/C)	89 AYA, 37 P/C	Physical illness	AYA with neurofibromatosis 1, primary immune-deficiency, cancer, and sickle cell disease and their P/C	Black (AYA 30.3%; P/G 8.1%), Indigenous (AYA 3.4%; P/G 2.7%), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity	1. Transition information and service needs
Patel et al (2022)⁹³	Prospective cross-sectional study	USA	12–25	35 AYA, 30 P/C	Physical illness	Turner syndrome	Black (AYA 14%; P/G 20%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. household composition, 4. employment, 3. education level, 5. SES, 6. comorbid behavioral, mental health and/or neurodevelopmental condition	1. Transition readiness
Prussien et al (2022)⁴⁸	Cross-sectional study	USA	15–29	195 AYA	Physical illness	AYA survivors of childhood cancer	Black (6.2%), Indigenous (0%)^a, 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. primary caregiver education, 3. insurance type, 4. neighborhood income	1. Transition beliefs, expectations, and goals
Teh et al (2022)⁹⁴	Cross-sectional study	Singapore	NR	152 AYA	Physical illness	AYA with rheumatic disease	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender^b	1. Transition readiness
Verlenden et al (2022)⁹⁵	Cross-sectional study	USA	18–30	15 697 AYA	Developmental condition	AYA with and without disabilities	Black (13.3%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Presence of disability	1. Healthcare service utilization, 2. unmet need and satisfaction, 3. financial worry
Bitencourt et al (2021)⁵²	Retrospective cross-sectional study	USA	17+	190 AYA	Physical illness	AYA with childhood-onset systemic lupus erythematosus	Black (35%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. Insurance, 3. household median income, 4. contact with child protection services, 5. gender	1. End-stage renal disease or death, 2. time to first hospitalization
Chisolm et al (2021)⁹⁶	Cross-sectional study	USA	12–18	417 AYA	NR	AYA with special healthcare needs	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Health literacy, 2. race and ethnicity, 3. Gender, 4. caregiver education, 5. place of residence	1. Transition readiness, 2. healthcare utilization
Harris et al (2021)⁹⁷	Retrospective cohort study	USA	13–24	103 AYA	Physical illness	HIV	Black (100%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. chronic comorbidities, 3. mental health condition	1. Transition readiness
Ilango et al (2021)⁹⁸	Cross-sectional study	USA	12–17	29 617 AYA	NR	AYA with and without special healthcare needs	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR),	1. Presence/absence of special healthcare needs	1. Healthcare transition preparation, 2. transition discussion between HCP and AYA, 3. HCP worked with AYA to develop skills, 4. AYA saw HCP alone before transition, 5. family partnership in decision-making, 6. AYA has medical home, 7. continuous health insurance, 8. access to community-based services
Johnson et al (2021)⁹⁹	Systematic review	USA	NA	16 articles included in analysis	Physical illness	AYA with inflammatory bowel disease	NA	1. Gender, 2. race and ethnicity, 3. socioeconomic status, 4. education level, 5. illness type	1. Transition readiness
Katz et al (2021)⁵¹	Retrospective review	USA	>21	101 AYA	Physical illness	Pediatric liver transplant recipients	Black (42.2%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Race and ethnicity	1. Mortality, 2. retransplantation
McColl et al (2021)¹⁰⁰	Cross-sectional study	Canada	14–20	70 AYA	Physical illness	AYA with juvenile idiopathic arthritis (JIA) and childhood-onset systemic lupus erythematosus (cSLE)	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. JIA versus cSLE^b	1. Transition readiness
Nip et al (2021)¹⁰¹	Retrospective cohort study	USA	13–24	38 053 AYA	Physical illness	Type 1 and type 2 diabetes mellitus (T1D, T2D)	Black T1D youth = 14.2%, T1D young adults = 15.6%; T2D youth = 11.9%, T2D young adults = 18.2%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. income, 3. insurance	1. Annualized diabetes-related hospitalization rate
Perry Caldwell et al (2021)¹⁰²	Cross-sectional descriptive exploratory study	USA	NR	239 AYA	Physical illness	AYA with and without sickle cell disease	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Household income, 2. presence or absence of sickle cell disease, 3. P/C level of education	1. Health literacy
Pundyk et al (2021)¹⁰³	Prospective population-based cohort study	Canada	16+	652 AYA	Physical illness	AYA with type 1 and 2 diabetes mellitus	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. geographic location, 3. SES, 4. education level	1. Transition success (4+ visits in 2 y after transition)
Rague et al (2021)¹⁰⁴	Cross-sectional study	USA	12–31	200 AYA	Physical illness	AYA with spina bifida	Black (11.5%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Health literacy, 2. race and ethnicity, 3. Insurance, 4. Gender, 5. level of education	1. Transition readiness
Smith et al (2021)¹⁰⁵	Cross-sectional study	USA	13–25	82 AYA	Physical illness	AYA with epilepsy	Black (6.1%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. Gender, 3. income	1. Transition readiness
Sritharan et al (2021)⁵³	Retrospective audit	Australia	16–25	220 AYA	Physical and mental illness	AYA with diabetes +/− comorbid mental health conditions who attend a local diabetes transition clinic	Black (NR), Indigenous (2.7%), 2SLGBTQ+ (NR)	1. Type 1 vs. type 2 diabetes, 2. race and ethnicity (indigenous), 3. Gender, 4. comorbid mental health condition	1. Health status (HbA1c level, hospitalizations associated with DKA, long-term complications)
Wright et al (2021)¹⁰⁶	Mixed methods (qualitative and quantitative interviews)	USA	NR	119 AYA	NR	AYA with 1–5 chronic medical conditions	Black (6.1%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. number of chronic comorbidities	1. Link to primary care provider, 2. link to specialty care provider, 3. hospitalizations, 4. emergency visits, 5. having copy of medical records, 6. taking their medication, 7. running out of medication
Zuar et al (2021)¹⁰⁷	Prospective cohort study	USA	16–22	69 AYA	Physical illness	AYA with inflammatory bowel disease	Black (4.76%), Indigenous (0%), 2SLGBTQ+ (NR)	1. Gender, 2. education	1. Transition readiness, 2. self-efficacy
Gaydos et al (2020)⁴⁷	Cross-sectional study	USA	11–19	451 P/C	Physical illness	P/C of AYA with congenital heart defects	Black (18.7%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Education, 2. insurance, 3. disease severity	1. Health-related quality of life
Heron et al (2020)¹⁰⁸	Cross-sectional study	USA	12–17	5862 AYA	NR	AYA with special healthcare needs	Black (15.8%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. comorbid disability (ADHD or ASD)	1. Transition discussions with HCP, 2. HCP/AYA/ caregiver interactions
Kennedy et al (2020)¹⁰⁹	Cross-sectional study	Canada	NR	48 AYA	Physical illness	AYA living with HIV	Black (40%), Indigenous (13%), 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. foster care, 3. group home, 4. contact with child protection services, 5. household income, 6. comorbid mental health diagnosis	1. Transition preparedness, 2. perception of adult HIV care
Leeb et al (2020)¹¹⁰	Cross-sectional study	USA	12–17	29 286 AYA	Mental and developmental condition	AYA with behavioral (ADHD, conduct disorder, Tourette syndrome), emotional (anxiety, depression), and developmental disorders (ASD, learning disability, intellectual disability, developmental delay, speech and language disorder)	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Presence or absence of behavioral, emotional, and/or developmental disorder	1. Transition planning with HCP, 2. time alone with HCP, 3. HCP worked with AYA, 4. HCP discussed transition with AYA
Varty et al (2020)	Systematic review	USA	NR	33 articles included in analysis	NR	AYA with chronic conditions	NA	1. Gender, 2. median household income, 3. household structure, 4. insurance type, 5. health literacy	1. Transition readiness
Zhong et al (2020)³⁷	Cross-sectional study	USA	12–29	59 AYA	Physical illness	AYA with chronic kidney disease or hypertension	Black (28.8%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Health literacy, 2. race and ethnicity, 3. insurance, 4. gender, 5. intersection between race and health literacy, 5. intersection between gender and health literacy, 6. intersection between insurance and health literacy, 7. intersection between illness and health literacy	1. Transition readiness, 2. disease knowledge, 3. self-management, 4. communication with HCP
Lazaroff et al (2019)¹¹¹	Cross-sectional study	USA	17–21	91 AYA, 54 P/C	Physical illness	AYA with rheumatic disease and their P/C	Black (12.4% AYA, 5.8% PC), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender	1. Transition readiness
Leavey et al (2019)¹¹²	Retrospective chart review	UK	NR	373 AYA	Mental illness	AYA eligible to transfer to adult mental health services	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. education and employment	1. Referral from child or adolescent services to adult mental health services
Berquist McKenzie et al (2019)¹¹³	Cross-sectional study	USA	12–18	17 114 AYA	NR	AYA with special healthcare needs	Black (14.0%), Indigenous (NR)^a, 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. language, 3. education, 4. household income, 5. insurance status, 6. comorbidity, 7. medical complexity, 8. gender	1. HCP discussed shift to adult provider, 2. HCP discussed adult healthcare needs, 3. anyone discussed healthcare insurance, 4. HCP usually or always encourages AYA to take responsibility when needed, 5. AYA receives services necessary to transition to adult care
Baca et al (2018)¹¹⁴	Prospective community-based study	USA	18–36	308 AYA	Physical illness	AYA with epilepsy	Black (11.7%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender^b, 2. race and ethnicity^b, 3. education^b, 4. insurance^b, 5. comorbidity^b8. chronic condition	1. Transition discussion
Crowley et al (2018)¹¹⁵	Retrospective cohort study	USA	NR	133 AYA	Physical illness	AYA with cystic fibrosis who have transitioned to adult care	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Social complexity, 2. medical complexity	1. Hospitalizations pretransfer, 2. hospitalizations posttransfer, 3. outpatient visits pretransfer, 4. outpatient visits posttransfer
Lebrun-Harris et al (2018)⁷²	Cross-sectional study	USA	12–17	20 708 AYA	NR	AYA with and without special healthcare needs	Black (13.7%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. insurance type, 4. household education level, 5. household poverty level	1. AYA received services to make the transition to adult care, 2. HCP discussed shift to adult provider when needed, 3. HCP actively worked with AYA to gain skills and understand changes to healthcare, 4. AYA had time alone with HCP at last preventative check-up
Nugent et al (2018)⁶⁶	Cross-sectional study	USA	12–17	17 114 AYA	Developmental condition	AYA with Down syndrome	Black (13.8%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. insurance, 4. comorbidity	Discussion with provider about: 1. shifting to adult provider, 2. adult healthcare needs, 3. maintaining health insurance coverage, 4. increasing responsibility for self-care
Tanner et al (2018)⁷³	Mixed methods	USA	21–24	132 AYA	Physical illness	AYA living with HIV	Black (78%), Indigenous (NR), 2SLGBTQ+ (62.9% gay/lesbian; 13.6% bisexual; 2.3% questioning)	1. Gender, 2. race and ethnicity, 3. insurance, 4. disclosure-related stigma	1. Transition success
Toth et al (2018)¹¹⁶	Cross-sectional study	Cambodia	15–17	328 AYA	Physical illness	AYA living with HIV	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender^b, 2. education, 3. socioeconomic status, 4. housing, 5. stigma	1. Preparedness for transition
Alassaf et al (2017)¹¹⁷	Retrospective study	Canada	NR	102 AYA	Physical illness	AYA with type 1 diabetes mellitus	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. presence of comorbidity, 3. level of education	1. Frequency of diabetes-related adult hospital visits for hyperglycemia, 2. frequency of diabetes-related adult hospital visits for hypoglycemia, 3. difference in mean hba1c from pre to posttransfer to adult care
Barr et al (2017)¹¹⁸	Systematic review	Canada	NA	5 articles included for analysis	Mental illness	AYA with mental health conditions	NA	1. Insurance coverage, 2. employment	NA
Castensoe Seidenfaden et al (2017)¹¹⁹	Retrospective cohort study	Denmark	14–22	126 AYA	Physical illness	AYA with type 1 diabetes mellitus	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. comorbidity, 3. presence of learning disability and/or mental health condition, 4. divorced parents	1. Diabetes-related hospital admissions, 2. HbA1c level
Judd et al (2017)¹²⁰	Cohort study	UK and Ireland	>13	1215 AYA	Physical illness	AYA with perinatal HIV	Black (80%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. gender, 3. immigrant	1. CD4 count change during transition to adult care
Lolekha et al (2017)¹²¹	Pre and postprogram intervention	Thailand	14–22	161 AYA	Physical illness	AYA with HIV	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. occupation, 3. education level, 4. literacy, 5. household composition, 6. parent status, 7. monthly household income	1. Health-related knowledge score >95%
Miller et al (2017)¹²²	Cross-sectional study	USA	15–25	193 AYA	Physical illness	Childhood cancer survivors	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. ethnicity, 3. health insurance	1. Health-related self-efficacy
Mitchell et al (2017)¹²³	Retrospective cohort study	Australia	17–21	18 AYA	Physical illness	Pediatric liver transplant recipients	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. comorbid psychological disorder	1. Clinic attendance/compliance
Morsa et al (2017)¹²⁴	Scoping review	France	NA	20 articles included for analysis	NR	AYA with any chronic health condition	NA	1. Gender, 2. social level, 3. education level, 4. employment level, 5. incapacity level	NA
Perera et al (2017)¹²⁵	Pilot study	Australia	16–25	245 AYA	Mental illness	Youth transitioning from child or adolescent to adult mental health services	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Discharge diagnosis, 2. housing	1. Referral to adult mental health services, 2. delay in engagement with adult mental health services
Sawicki et al (2017)¹⁷	Cross-sectional study	USA	16–17	1355 AYA	NR	Youth with chronic illness transferring to adult care	Black (24% health plan 1; 18% health plan 2), Indigenous (0.3% health plan 1; 0.4% health plan 2), 2SLGBTQ+ (NR)	1. Gender^b, 2. chronic condition^b, 3. insurance type	1. Transition self-management counseling, 2. prescription medication counseling, 3. transfer planning
Walsh et al (2017)¹²⁶	Cross-sectional study	USA	12–17	1125 AYA and P/C	Developmental condition	AYA with autism spectrum disorder (autism, Asperger’s disorder, pervasive developmental disorder, or other)	Black (11.0%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. ASD symptom severity, 4. insurance coverage, 5. poverty level	1. Transition discussion, 2. discussion of adult healthcare needs, 3. discussion of healthcare insurance, 4. encourage AYA to take responsibility for healthcare needs
Beal et al (2016)¹²⁷	Cross-sectional study	USA	12–22	163 AYA	Physical and developmental condition	AYA with type 1 diabetes, Turner syndrome, spina bifida, and autism spectrum disorder	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender^b, 2. ethnicity^b, 3. parent education level^b, 4. household composition^b, 5. health literacy^b	1. Transition readiness (via TRAQ), 2. perceived readiness to transition responsibility to AYA, 3. perceived importance of transitioning responsibility to AYA, 4. perceived confidence in transitioning responsibility to AYA, 5. transition readiness (via RTQ-T), 6. transfer importance (via RTQ-T), 7. transfer confidence (via RTQ-T)
Javalkar et al (2016)⁵⁰	Cross-sectional study	USA	12–31	511 AYA	NR	AYA diagnosed with chronic condition	Black (42%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. diagnosis type, 4. household income, 5. English-speaking	1. Knowledge of condition, 2. knowledge of medications, 3. adherence, 4. knowledge of insurance, 5. knowledge about ongoing support, 6. overall transition readiness
Kuhlthau et al (2016)¹²⁸	Cross-sectional study	USA	13–26	183 P/C	Developmental condition	P/C of AYA with autism spectrum disorder	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. ASD severity, 2. caregiver depression	1. Rate of transition service receipt
Son et al (2016)¹²⁹	Cohort study	USA	<18	50 AYA	Physical illness	AYA with systemic lupus erythematosus	Black (22%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. education level, 3. median annual household income, 4. anxiety or depression diagnosis	1. Time between pediatric and adult care, 2. gaps in care, 3. unscheduled acute care utilization, 4. missed appointments
Syed et al (2016)¹³⁰	Cross-sectional study	Canada	15–19	184 AYA	Physical illness	Adolescent cancer survivors	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. parent marital status	1. Self-management skills
Suris et al (2016)¹³¹	Cross-sectional study	Switzerland	NR	72 P/C	NR	P/C of AYA with chronic illness who have transferred to adult care	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. SES, 2. parent employment status	1. Ease of transfer process
Weijsenfeld et al (2016)¹³²	Longitudinal study	Netherlands	21–26	59 AYA	Physical illness	AYA with HIV	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. birth region, 3. Education, 4. Employment, 5. family composition, 6. SES	1. Virological failure
While et al (2016)³⁸	Cross-sectional study	Ireland	13–26	217 AYA	Physical illness	AYA with congenital heart disease, cystic fibrosis, diabetes	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. disease type	1. Health-related quality of life
Bingham et al (2015)¹³³	Cross-sectional study	USA	12–21	76 AYA	Physical illness	AYA with rheumatologic conditions	Black (4%), Indigenous (2%), 2SLGBTQ+ (NR)	1. Gender^b, 2. race and ethnicity^b, 3. household education^b, 4. comorbid disease type, 5. living arrangement^b, 6. employment	1. Calls doctor independently, 2. calls pharmacist independently, 3. makes routine appointments independently, 4. cancels appointments independently, 5. remembers to take medications independently
Geerlings et al (2015)¹³⁴	Cross-sectional study	Netherlands	15–25	138 AYA	Physical illness	AYA with epilepsy	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. living arrangement, 3. unsupportive family environment	1. Risk of poor psychosocial outcomes following transition to adult care
Gray et al (2015)¹³⁵	Cross-sectional study	USA	16–25	195 AYA	Physical illness	AYA with inflammatory bowel disease	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. illness type	1. Transition readiness
Mann et al (2015)⁴²	Cross-sectional study	USA	15–24	695 AYA	Physical illness	AYA with spina bifida	Black (31.5%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. gender, 3. residential area, 4. access to nutrition support program	1. Incidence of all acute care visits (emergency department and inpatient), 2. Incidence of emergency department visits, 3. Incidence of inpatient stays
Milam et al (2015)⁴⁵	Longitudinal study	USA	15+	193 AYA	Physical illness	AYA survivors of childhood cancer	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. education^b, 4. health insurance, 5. comorbid depressive symptoms	1. Health care visit related to cancer in last 2 y, 2. intention of attending a cancer follow-up visit in the next 2 y
Strickland et al (2015)¹³⁶	Population-based study	USA	<18	40 242 AYA	NR	AYA with special healthcare needs	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. language, 4. geographic location, 5. family income	1. Effective transition planning for adult healthcare
Williams et al (2015)¹³⁷	Cross-sectional study	USA	NR	37 AYA	Physical illness	AYA with sickle cell disease	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR),	1. Gender, 2. geographic location	1. Transition knowledge, 2. disease knowledge, 3. healthcare system knowledge, 4. transition self-efficacy
Wisk et al (2015)⁴¹	Retrospective cohort study	USA	16–26	60 233 AYA	NA	Adolescents attending a pediatric-focused PCP for preventative care	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. chronic condition, 3. neighborhood poverty	1. Transfer timing to adult-focused PCP, 2. transfer gap between pediatric- to adult-focused PCP, 3. predicted age at transfer, 4. predicted gap length
Aratani et al (2014)⁴³	Cross-sectional study	USA	17–24	33 588 AYA	Mental illness	AYA with mental health needs	Black (9%), Indigenous (<1%), 2SLGBTQ+ (NR)	1. Intersection between gender and race and ethnicity, 2. county of residence, 3. insurance status, 4. mental health diagnosis	1. Return visit to emergency services after first visit for a psychiatric episode
Cheak-Zamora et al (2014)¹³⁸	Cross-sectional study	USA	12–17	101 P/C	Developmental condition	P/C of AYA with ASD	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender^b, 2. race and ethnicity^b, 3. maternal education, 4. family structure 5. family income^b, 6. insurance status, 7. geographic location, 8. financial problems^b, 9. condition type	1. Transition discussion, 2. discussion about change in adult healthcare needs, 3. discussion about insurance coverage, 4. encourage AYA to take responsibility for healthcare needs
Cooper et al (2014)¹³⁹	Population-based cohort study	Australia	18–38	1309 AYA	Physical illness	AYA with type 1 diabetes	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. socioeconomic background level	1. Early adulthood all-cause mortality
Javalkar et al (2014)⁴⁴	Cross-sectional study	USA	13–21	52 AYA	Physical illness	Chronic kidney disease	Black (50%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. insurance status, 4. parent education level	1. Healthcare utilization, 2. readiness for self-management and transition, 3. medication adherence
Lulu et al (2014)¹⁴⁰	Prospective cross-sectional study	USA	12–23	30 AYA	Physical illness	Multiple sclerosis	Black (7%), Indigenous (0%), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. SES	1. Nonadherence with disease-modifying therapy
Pyatak et al (2014)¹⁴¹	Mixed-methods	USA	NR	20 AYA	Physical illness	Type 1 diabetes	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Psychosocial stressors	1. HbA1c level, 2. months since last physician visit, 3. emergency department visits
Van Staa et al (2014)³⁹	Longitudinal study	Netherlands	18–25	518 AYA	NR	AYA with chronic conditions	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. educational level, 3. disability benefits	1. Self-efficacy, 2. satisfaction with transition to adult care
Cheak-Zamora et al (2013)¹⁴²	Cross-sectional study	USA	12–17	40 723 AYA	Developmental condition	AYA with autism spectrum disorder (ASD) and other special healthcare needs (OSHCN)	Black (17.1% with ASD; 15.2% OSHCN), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. financial issues, 4. developmental disability, 5. mental health condition, 6. physical health condition, 7. Multimorbidity, 8. poverty level, 9. education level, 10. insurance coverage	1. Receipt of healthcare services among AYA with autism spectrum disorder
Gurvitz et al (2013)¹⁴³	Cross-sectional study	USA	18+	922 AYA	Physical illness	AYA with congenital heart disease who have transferred to adult care	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender^b, 2. race and ethnicity^b, 3. education level^b, 4. clinic location, 5. disease complexity	1. Gap in care
Knapp et al (2013)¹⁴⁴	Cross-sectional study	USA	15–18	376 AYA and P/C	NR	AYA with special healthcare needs and their P/C	Black (40%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. parent education level	1. Amount of transition planning
Lotstein et al (2013)¹⁴⁵	Cohort study	USA	18+	185 AYA	Physical illness	AYA with diabetes	Black (10%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. insurance status, 4. parent education level, 5. comorbid condition	1. Successfully leaving pediatric care, 2. glycemic control after transition
McManus et al (2013)⁶⁷	National cross-sectional study	USA	12–18	17 114 P/C	NR	AYA with special healthcare needs	Black (14.0%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. primary language, 4. poverty status, 5. condition type, 6. insurance status	1. Discussion of shift to adult provider, 2. discussion of adult healthcare needs, 3. discussion of health insurance, 4. encouraged to take responsibility, 5. received transition services
Okumura et al (2013)¹⁴⁶	Cross-sectional study	USA	19–23	1865 AYA	NR	AYA with special healthcare needs	Black (7.6% in 2001; 4.6% in 2007), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. condition severity, 3. insurance status	1. Worsening health status
Huang et al (2012)⁴⁶	Cross-sectional study	USA	≥10	74 AYA	Physical illness	AYA with inflammatory bowel disease	Black (10.8%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. gender, 3. insurance coverage	1. Functional health literacy, 2. disease knowledge, 3. self-efficacy, 4. knowledge of past medical history
Garvey et al (2012)¹⁴⁷	Cross-sectional study	USA	22–30	258 AYA	Physical illness	AYA with type 1 diabetes	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. education, 3. employment^b, 4. insurance status, 5. comorbidities	1. Gap > 6 mo between pediatric and adult care, 2. percent change in HbA1c posttransition
Richmond et al (2012)⁴⁰	Cross-sectional study	USA	12–17	7774 AYA	NR	AYA with special healthcare needs	Black (11.5%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. emotional, developmental, behavioral problem, 4. household education, 5. Income, 6. health insurance, 7. geographic location, 8. intersectional	1. Medical home transition
Goudie et al (2011)⁴⁹	Population-based cross-sectional study	USA	13–26	1768 AYA	NR	AYA with special healthcare needs	Black (14.2% children cohort; 10.3% young adult cohort), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. household income, 4. insurance status	1. Delayed or foregone care; 2. problems getting care, 3. unfulfilled prescriptions because of cost
Fishman et al (2011)¹⁴⁸	Cross-sectional study	USA	NR	294 AYA	Physical illness	AYA with inflammatory bowel disease	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender	1. Knowledge of medication side effects
Mutze et al (2011)¹⁴⁹	Cross-sectional study	Germany	19–41	72 AYA	Physical illness	AYA with phenylketonuria	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender^b, 2. AYA education level	1. Tyrosine concentration, 2. phenylalanine concentration
Nishikawa et al (2011)¹⁵⁰	Cross-sectional study	USA	12–17	18 198 AYA	NR	AYA with special healthcare needs	Black (16.0%), Indigenous (NR), 2SLGBTQ+ (NR),	1. Gender, 2. race and ethnicity, 3. parent education level, 4. household income, 5. health insurance	1. Adult health care discussion, 2. adult insurance discussion, 3. encouraged to take responsibility for health
Pai et al (2011)¹⁵¹	Scoping review	USA	NA	12 articles included for analysis	NR	AYA with any chronic health condition	NA	1. Comorbid mental health conditions, 2. insurance status	NA
Sawicki et al (2011)¹⁵²	Cross-sectional study	USA	19–23	1865 AYA	NR	AYA with special healthcare needs	Black (NR), Indigenous (NR), SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. Income, 4. AYA education level, 5. parent education level, 6. insurance status, 7. disability	1. HCP discussed adult healthcare needs, 2. HCP discussed how to obtain health insurance as an adult
Lotstein et al (2010)⁵⁴	Narrative review	USA	NA	NR	NR	AYA with special healthcare needs	NA	1. Race and ethnicity	NA
Perry et al (2010)¹⁵³	Case note audit	Australia	18–28	239 AYA	Physical illness	AYA with type 1 diabetes	Black (NR), Indigenous (4.2%), 2SLGBTQ+ (NR)	1. Geographic location	1. Unplanned hypoglycemic episodes requiring assistance, 2. unplanned hospital admission, 3. unplanned emergency department visits, 4. planned consult with doctor, 5. planned consult with nurse educator, 6. planned consult with dietitian, 7. retinal assessment, 8. renal function assessment, 9. foot check, 10. missed 1+ appointments, 11. blood pressure control, 12. BMI control, 13. HbA1c control
Van den Heuvel et al (2010)¹⁵⁴	Historical cohort study	Netherlands	14–22	162 AYA	Physical illness	Pediatric kidney transplant recipients	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. immigration status	1. Risk of acute kidney rejection, 2. risk of graft failure, 3. risk of chronic kidney rejection
Williams et al (2010)¹⁵⁵	Cross-sectional study	Canada	11–19	49 AYA	NR	AYA with special healthcare needs from a neurology clinic and transition program	Black (2.0%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender^b, 2. parent education level, 3. race and ethnicity^b	1. Self-management
Bergstrom et al (2009)¹⁵⁶	Prospective study	Sweden	16–21	150 AYA	Physical illness	AYA with asthma	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender	1. Lung function
Devernay et al (2009)¹⁵⁷	Cross-sectional study	France	18–31	568 AYA	Physical illness	AYA with Turner Syndrome	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. AYA education level, 2. paternal socio-professional class, 3. AYA socio-professional class^b	1. Adequate lipid level follow-up (F/U), 2. adequate blood pressure F/U, 3. adequate blood glucose F/U, 4. adequate thyroid hormone F/U, 5. adequate liver enzyme F/U, 6. adequate audiometry F/U, 7. adequate echocardiogram F/U
Lotstein et al (2009)⁶⁸	Cross-sectional study	USA	12–17	18 198 AYA	NR	AYA with special healthcare needs	Black (15.5%), Indigenous (NR)^a, 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. primary language, 4. income level, 5. insurance coverage	1. Discussed shift to adult provider with HCP, 2. discussed adult healthcare needs with HCP, 3. discussed health insurance, 4. HCP encouraged AYA to take responsibility, 5. received services necessary to transition
Nakhla et al (2009)⁷⁹	Retrospective cohort study	Canada	<20	1507 AYA	Physical illness	AYA with diabetes mellitus	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. income	1. Diabetes-related hospitalizations after transition to adult care, 2. eye care visit within 2 y after transition to adult care
Lotstein et al (2008)¹⁵⁸	Cross-sectional study	USA	21–24	77 AYA	NR	AYA with special healthcare needs	Black (13%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. AYA education level, 4. comorbid condition, 5. comorbid mental health condition, 6. receives supplemental security income	1. 1+ adverse transition event (ie, no usual source of care, foregone care, uninsured, gap in insurance)
Newland et al (2008)¹⁵⁹	Descriptive correlational study	USA	14–21	74 AYA	Physical illness	AYA with sickle cell disease	Black (98.5%), Indigenous NR, 2SLGBTQ+ (NR)	1. Gender	1. Transition knowledge, 2. autonomy, 3. severity of disease
Scal et al (2008)¹⁶⁰	Cross-sectional study	USA	12–24	2372 AYA	Physical illness	AYA with asthma	Black (18.3% adolescents; % 14.4% young adults), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. race and ethnicity, 3. insurance status, 4. poverty status	1. Delayed care because of financial barriers, 2. unmet needs because of financial barriers, 3. delayed care because of nonfinancial barriers
Callahan et al (2007)¹⁶¹	Cross-sectional study	USA	16–25	5170 AYA	Developmental condition	AYA with and without disabilities	Black (16.9% reported disability; 12.8% no reported disability), Indigenous (NR), 2SLGBTQ+ (NR)	1. Disability status	1. Health insurance coverage, 2. months of uninsurance following transition to adult care
Callahan et al (2006)¹⁶²	Cross-sectional study	USA	19–29	1109 AYA with chronic condition; 22 481 without chronic condition	NR	AYA with disabling chronic conditions, defined as a physical, mental, or emotional problem causing functional impairment	Black (15.3% reported chronic condition; 13.4% no reported chronic condition), Indigenous (NR), 2SLGBTQ+ (NR)	1. Intersecting disabling chronic condition and insurance status	1. Delated medical care because of cost, 2. did not get medical care because of cost, 3. could not afford to fill prescriptions, 4. no contact with HCP in past year, 5. no usual source of care
Anie et al (2005)¹⁶³	Cross-sectional study	UK, USA	14+	224 AYA	Physical illness	AYA with sickle cell disease	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Gender, 2. AYA education level	1. Self-efficacy, 2. self-management
Lotstein et al (2005)¹⁶⁴	Cross-sectional study	USA	13–17	5533 AYA	NR	AYA with special healthcare needs	Black (9.8%), Indigenous (NR), 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. Gender, 3. income level, 4. type of insurance	1. HCP discussed changing needs in adulthood, 2. AYA has plan for addressing changing needs, 3. HCP discussed shift to adult provider
Scal et al (2005)¹⁶⁵	Cross-sectional study	USA	14–17	4332 AYA	NR	AYA with special healthcare needs	Black (NR), Indigenous (NR), 2SLGBTQ+ (NR)	1. Race and ethnicity, 2. Gender, 3. parental education, 4. family poverty status, 5. insurance status, 6. severity of health condition	1. Adequacy of healthcare transition services

A complete data abstraction table is available in Appendix C in the Supplemental Information. Illness categories include physical, mental, or developmental illness. 2SLGBTQ+, 2-spirit, lesbian, gay, bisexual, transgender, queer or questioning, and others; AYA, adolescents and young adults; HCP, healthcare provider; NA, not applicable; NR, not reported; P/C, parents or caregivers; PCP, primary care provider; SES, socioeconomic status; SSDOH, social and structural drivers of health and demographic characteristics.

a

Studies included Indigenous AYA in the “other” race and ethnicity category and exact numbers are not available.

b

Studies did not report quantitative results because of nonsignificance.

View Large

Fifty (50%) studies included Black youth, of which the percentage of Black participants ranged from 2% to 100%. Seven studies (6.9%) involved Indigenous youth ranging from <1% to 13% of participants, whereas 3 studies (3.0%) reported including Indigenous youth in the “other race and ethnicity” category. However, the exact number of participants was not reported. Ninety-four (93%) studies included binary male and female categories. One study (1.0%) reported including 2SLGBTQ+ youth, of which gay, lesbian, bisexual, and questioning participants were reported. Although authors included transgender and nonbinary youth in the definition of their gender inclusion criteria, no transgender, nonbinary, or 2 spirit youth were reported in their sample.

Fifty-nine studies included youth with physical illnesses (n = 59, 58%), 7 (7.2%) with physical disabilities and developmental conditions, and 4 (4.1%) with mental health conditions. Illness populations were not specified in 28 (28%) studies, of which 19 (19%) focused on youth with special healthcare needs and 1 (1.0%) in youth attending primary care clinics. Of the studies focused on youth with physical illnesses, the most common were diabetes (n = 9; 8.9%), HIV (n = 7; 6.9%), and inflammatory bowel disease (n = 7; 6.9%). Of those studying youth with developmental conditions, populations included autism spectrum disorder (n = 4; 4.0%), Down syndrome (n = 1; 1.0%), and various other disabilities (n = 3; 3.0%). Studies in mental illness populations were not condition specific.

Transition Outcome Themes

We included 101 studies identifying 12 social drivers (childhood environment, income, education, employment, health literacy, insurance, geographic location, language, immigration, food security, psychosocial stressors, and stigma), 5 demographic characteristics (race and ethnicity, gender, illness type, illness severity, and comorbidity), and no structural drivers (Table 2). Abstracted transition outcomes were categorized into 23 themes (Table 3) based on clinically-relevant themes described previously by Bailey et al (2022).²⁵ Of these, the most common themes were health status (n = 21 studies [21%]; n = 68 associations with SSDOH [8.7%]), transition planning and preparation (n = 18 studies [18%]; n = 109 associations [14%]), autonomy (n = 16 studies [16%]; n = 72 associations [9.2%]), and acute care utilization (n = 15 studies [15%]; n = 77 associations [9.2%]). Few transition outcomes related to transfer completion (n = 1 study [1.0%]; n = 14 associations [1.8%]), communication (n = 1 study [1.0%]; n = 6 associations [0.8%]), transfer timing (n = 1 study [1.0%]; n = 6 associations [0.8%]), and healthcare engagement (n = 1 study [1.0%]; n = 4 associations [0.5%]).

TABLE 2

Social and Structural Drivers of Health and Demographic Characteristics Included In This Scoping Review

Category of SSDOH	SSDOH Studied	Number of Studies^a(%)	Number of Associations^b (%)
	Insurance status	30 (30)	80 (10)
	Income	29 (29)	77 (9.8)
Social drivers of health	Education level	15 (15)	67 (8.6)
	Childhood environment	13 (13)	28 (3.6)
	Geographic location	10 (10)	39 (5.0)
	Employment status	7 (6.9)	11 (1.4)
	Health literacy	5 (5.1)	18 (2.3)
	Primary language	4 (4.0)	17 (2.2)
	Immigration	2 (2.0)	4 (0.5)
	Food access	1 (1.0)	3 (0.4)
	Psychosocial stressors	1 (1.0)	3 (0.4)
	Stigma	1 (1.0)	1 (0.1)
Demographic characteristics	Gender	60 (59)	143 (18)
	Race and ethnicity	41 (41)	116 (15)
	Illness type	18 (18)	72 (9.2)
	Comorbidity	16 (16)	51 (6.5)
	Condition severity	9 (8.9)	27 (3.4)
Intersectional	Health literacy and race and ethnicity	1 (1.0)	1 (0.1)
	Health literacy and gender	1 (1.0)	1 (0.1)
	Health literacy and insurance status	1 (1.0)	1 (0.1)
	Health literacy and illness type	1 (1.0)	1 (0.1)
	Race and ethnicity and gender	2 (2.0)	2 (0.3)
	Race and ethnicity and illness type	1 (1.0)	1 (0.1)
	Race and ethnicity and education level	1 (1.0)	1 (0.1)
	Race and ethnicity and income	1 (1.0)	1 (0.1)
	Race and ethnicity and insurance status	1 (1.0)	1 (0.1)
	Illness type and insurance status	1 (1.0)	1 (0.1)

Category of SSDOH	SSDOH Studied	Number of Studies^a(%)	Number of Associations^b (%)
	Insurance status	30 (30)	80 (10)
	Income	29 (29)	77 (9.8)
Social drivers of health	Education level	15 (15)	67 (8.6)
	Childhood environment	13 (13)	28 (3.6)
	Geographic location	10 (10)	39 (5.0)
	Employment status	7 (6.9)	11 (1.4)
	Health literacy	5 (5.1)	18 (2.3)
	Primary language	4 (4.0)	17 (2.2)
	Immigration	2 (2.0)	4 (0.5)
	Food access	1 (1.0)	3 (0.4)
	Psychosocial stressors	1 (1.0)	3 (0.4)
	Stigma	1 (1.0)	1 (0.1)
Demographic characteristics	Gender	60 (59)	143 (18)
	Race and ethnicity	41 (41)	116 (15)
	Illness type	18 (18)	72 (9.2)
	Comorbidity	16 (16)	51 (6.5)
	Condition severity	9 (8.9)	27 (3.4)
Intersectional	Health literacy and race and ethnicity	1 (1.0)	1 (0.1)
	Health literacy and gender	1 (1.0)	1 (0.1)
	Health literacy and insurance status	1 (1.0)	1 (0.1)
	Health literacy and illness type	1 (1.0)	1 (0.1)
	Race and ethnicity and gender	2 (2.0)	2 (0.3)
	Race and ethnicity and illness type	1 (1.0)	1 (0.1)
	Race and ethnicity and education level	1 (1.0)	1 (0.1)
	Race and ethnicity and income	1 (1.0)	1 (0.1)
	Race and ethnicity and insurance status	1 (1.0)	1 (0.1)
	Illness type and insurance status	1 (1.0)	1 (0.1)

a

A total of 101 studies were included in this review.

b

A total of 783 associations between SSDOH and transition outcome themes were identified.

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TABLE 3

Summary of Transition Outcome Themes Included in This Scoping Review

Transition Outcome Themes^a	Number of Studies (%)^b	Number of Associations Studied (%)^c
Health status	21 (21)	68 (8.7)
Transition planning or preparation	18 (18)	109 (14)
Autonomy	16 (16)	72 (9.2)
Acute care utilization	15 (15)	77 (9.8)
Transition education	14 (14)	63 (8.0)
Transition readiness	14 (14)	61 (7.8)
Self-management or self-efficacy	13 (13)	34 (4.3)
Finance or health insurance	12 (12)	53 (6.8)
Continuity of care	11 (11)	34 (4.3)
Health literacy	8 (7.9)	29 (3.7)
Access to care	7 (6.9)	34 (4.3)
Disease knowledge	5 (5.0)	29 (3.7)
Quality of care	4 (4.0)	16 (2.0)
Adherence to treatment	4 (4.0)	10 (1.3)
Appointment keeping	4 (4.0)	9 (1.1)
Transfer satisfaction	3 (3.0)	7 (0.9)
Patient or family-centered care	2 (2.0)	15 (1.9)
Quality of life	2 (2.0)	13 (1.7)
Preventative care	2 (2.0)	6 (0.8)
Transfer completion	1 (1.0)	14 (1.8)
Communication	1 (1.0)	6 (0.8)
Transfer timing	1 (1.0)	6 (0.8)
Healthcare engagement	1 (1.0)	4 (0.5)

Transition Outcome Themes^a	Number of Studies (%)^b	Number of Associations Studied (%)^c
Health status	21 (21)	68 (8.7)
Transition planning or preparation	18 (18)	109 (14)
Autonomy	16 (16)	72 (9.2)
Acute care utilization	15 (15)	77 (9.8)
Transition education	14 (14)	63 (8.0)
Transition readiness	14 (14)	61 (7.8)
Self-management or self-efficacy	13 (13)	34 (4.3)
Finance or health insurance	12 (12)	53 (6.8)
Continuity of care	11 (11)	34 (4.3)
Health literacy	8 (7.9)	29 (3.7)
Access to care	7 (6.9)	34 (4.3)
Disease knowledge	5 (5.0)	29 (3.7)
Quality of care	4 (4.0)	16 (2.0)
Adherence to treatment	4 (4.0)	10 (1.3)
Appointment keeping	4 (4.0)	9 (1.1)
Transfer satisfaction	3 (3.0)	7 (0.9)
Patient or family-centered care	2 (2.0)	15 (1.9)
Quality of life	2 (2.0)	13 (1.7)
Preventative care	2 (2.0)	6 (0.8)
Transfer completion	1 (1.0)	14 (1.8)
Communication	1 (1.0)	6 (0.8)
Transfer timing	1 (1.0)	6 (0.8)
Healthcare engagement	1 (1.0)	4 (0.5)

a

Based on the clinically-relevant transition outcome themes developed by Bailey et al (2022).²⁵

b

A total of 101 studies were included in this review.

c

A total of 783 associations between SSDOH and transition outcome themes were identified.

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Social and Structural Drivers of Health

Eleven social drivers of health (childhood environment, income, education level, employment status, health literacy, food access, primary language, immigration status, geographic location or place of residence, insurance status, and stigma) and 5 demographic characteristics (race, ethnicity, gender, illness type, illness severity or complexity, and presence of comorbidities) were studied (Table 3). No structural drivers of health were identified. The most commonly studied SSDOH were gender (n = 60 studies [59%]; n = 143 associations with transition outcomes [18%]), race and ethnicity (n = 41 studies [41%]; n = 116 associations [15%]), insurance status (n = 30 studies [30%]; n = 80 associations [10%]), and income (n = 29 studies [29%]; n = 77 associations [10%]). Four studies explored intersectional SSDOH: 1 studied the intersection between health literacy and gender, race and ethnicity, insurance, and illness type; 1 studied race and ethnicity and gender, illness type, education level, income, insurance status; 1 studied race and ethnicity and gender; and 1 studied illness type and insurance status. Several SSDOH were not studied, including sexual orientation, access to housing, and refugee status. No studies explored the effect of structural discrimination on transition outcomes, such as racism, sexism, homophobia, transphobia, and ableism.

Associations Between SSDOH and Transition Outcomes

A total of 783 associations between SSDOH and transition outcome themes were identified. Gender was significantly associated with communication (n = 1 association), where female participants had increased communication skills with healthcare providers compared with males (P = .003)³⁷; quality of life (n = 5), where female participants reported lower health-related quality of life across all 5 domains studied (P < .05)³⁸; transfer satisfaction (n = 1), where male participants reported increased transfer satisfaction (P = .03) compared with female participants³⁹; transfer completion (n = 2), where female participants were more likely to receive medical home transition compared with male participants (odds ratio [OR] = 1.3, P < .01)⁴⁰; and transfer timing (n = 2), which showed female participants transferred to adult primary care at a younger age than male participants (hazard ratio [HR] = 1.32, confidence interval [CI] = 1.29–1.36 for office visit transfer, HR = 1.42, CI = 1.38–1.46 for preventative visit transfer).⁴¹

Race and ethnicity was significantly associated with appointment attendance (n = 1), where Hispanic youth were less likely to have a follow-up appointment compared with white youth (OR = 0.33, P = .03)⁴²; and transfer completion (n = 3), where white youth were more likely to receive a medical home transition compared with both Black (OR = 1.5, CI = 1.1–2.0) and Hispanic youth (44.% of Hispanic youth received a transition, 57.7% non-Hispanic, P < .05).⁴⁰

Health insurance status was significantly associated with acute care utilization (n = 5), where youth with self-pay (OR = 0.63, P = .001) and private insurance (OR = 0.53, P = .001) were less likely to have a return emergency department visit compared with public insurance.⁴³ Additionally, there were increased emergency department visits (P = .02), hospital admissions (P = .04), and inpatient days (P = .009) in youth with self-pay or public compared with private insurance.⁴⁴ Health insurance status was also significantly associated with appointment attendance (n = 1; youth with insurance were more likely to attend follow-up appointments, P = .04)⁴⁵; disease knowledge (n = 1; youth with insurance had increased disease knowledge, P = .05)⁴⁶; quality of life (n = 1; youth without insurance reported higher quality of life, P < .0001)⁴⁷; transfer satisfaction (n = 1; youth with public insurance reported lower transfer satisfaction compared with private insurance, P < .01)⁴⁸; and transfer completion (n = 1; youth with adequate insurance coverage were more likely to have a medical home transition, OR = 1.8, P < .05).⁴⁰

Income was significantly associated with continuity of care (n = 3), where youth from higher poverty neighborhoods had a shorter gap between pediatric and adult primary care office (HR = 0.80, CI = 0.75–0.85) and preventative care visits (HR = 0.84, CI = 0.78–0.91),⁴¹ and youth with lower household income were more likely to experience a delay in care (OR = 1.4, CI = 0.8–2.3).⁴⁹ Income was also significantly associated with disease knowledge (n = 3; higher household income was associated with increased disease knowledge, P = .001–.016)⁵⁰; transfer completion (n = 2; higher household income was associated with increased likelihood of having a medical home transition)⁴⁰; and transfer timing (n = 1; youth from higher poverty neighborhoods transferred at a younger age, HR = 0.89, CI = 0.83–0.95).⁴¹

Of the intersectional SSDOH studied, gender and health literacy were significantly associated with transition readiness and communication with healthcare providers, and race and ethnicity and gender were significantly associated with acute care utilization. Finally, the intersections between race and ethnicity and gender, household education level, insurance status, illness type, and poverty level were significantly associated with transfer completion. Results are displayed in Table 4. Abstracted data are available in Appendix C.

TABLE 4

Association Between Social and Structural Drivers of Health and Transition Outcomes

	Race and Ethnicity	Gender	Insurance Status	Geographic Location	Childhood Environment	Condition Type	Condition Severity	Comorbidity	Income	Immigration	Education	Employment	Food Access	Primary Language	Health Literacy	Stigma
Access to care	No clear association: (n = 2 showed SD; n = 3 showed NSD)	No clear association: (n = 3 showed SD; n = 2 showed NSD)	No clear association: (n = 4 showed SD; n = 1 showed NSD)	No clear association: (n = 5showed SD; n = 1 showed NSD)	Not studied: (n = 0)	No clear association: (n = 2 showed SD; n = 1 showed NSD)	No significant association: (n = 1 showed NSD)	Significant association: (n = 1 showed SD)	No clear association: (n = 3 showed SD; n = 2 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)
Acute care utilization	No clear association: (n = 5 showed SD; n = 5 showed NSD)	No clear association: (n = 8 showed SD; n = 6 showed NSD)	Significant association: (n = 5 showed SD)	No clear association: (n = 4 showed SD; n = 7 showed NSD)	Significant association: (n = 1 showed SD)	Significant association: (n = 2 showed SD)	No clear association: (n = 7 showed SD; n = 2 showed NSD)	No clear association: (n = 3 showed SD; n = 5 showed NSD)	No clear association: (n = 2 showed SD; n = 1 showed NSD)	Not studied: (n = 0)	No clear association: (n = 1 showed SD; n = 5 showed NSD)	Not studied: (n = 0)	No clear association: (n = 2 showed SD; n = 1 showed NSD)	Not studied: (n = 0)	No clear association: (n = 1 showed SD; n = 2 showed NSD)	Not studied (n = 0)
Adherence to Treatment	No significant association: (n = 2 showed NSD)	No significant association: (n = 3 showed NSD)	Not studied (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Significant association: (n = 1 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	No clear association (n = 1 showed SD; n = 1 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Significant association (n = 1 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)
Attendance	Significant association: (n = 1 showed SD)	No clear association: (n = 1 showed SD; n = 2 showed NSD)	Significant association: (n = 1 showed SD)	Significant association: (n = 1 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Significant association: (n = 2 showed SD)	No clear association: (n = 2 showed SD; n = 1 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)
Autonomy	No clear association: (n = 4 showed SD; n = 7 showed NSD)	No clear association (n = 7 showed SD^66,106,113; n = 5 showed NSD)	No clear association (n = 6 showed SD^72,113; n = 2 showed NSD)	Significant association (n = 1 showed SD)	No significant association: (n = 4 showed NSD)	Significant association: (n = 8 showed SD)	No clear association: (n = 1 showed SD; n = 1 showed NSD)	Significant association: (n = 3 showed SD)	No clear association: (n = 4 showed SD; n = 4 showed NSD)	Not studied: (n = 0)	No clear association: (n = 2 showed SD; n = 6 showed NSD)	Significant association: (n = 2 showed SD)	Not studied: (n = 0)	No clear association: (n = 1 showed SD; n = 1 showed NSD)	Significant association: (n = 3 showed SD)	Not studied: (n = 0)
Communication	Not studied: (n = 0)	Significant association: (n = 1 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)
Continuity of care	No significant association: (n = 3 showed NSD)	No clear association: (n = 4 showed SD; n = 3 showed NSD)	No clear association: (n = 1 showed SD; n = 2 showed NSD)	Significant association: (n = 1 showed SD)	Significant association: (n = 1 showed SD)	Significant association: (n = 1 showed SD)	Significant association: (n = 3 showed SD)	No clear association: (n = 1 showed SD; n = 2 showed NSD)	Significant association (n = 3 showed SD)	Not studied: (n = 0)	No significant association (n = 2 showed NSD)	Significant association: (n = 2 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Significant association: (n = 1 showed SD)
Disease knowledge	No clear association: (n = 1 showed SD; n = 3 showed NSD)	No clear association: (n = 2 showed SD; n = 4 showed NSD))	Significant association: (n = 1 showed SD)	No clear association: (n = 3 showed SD; n = 1 showed NSD)	Not studied: (n = 0)	No clear association: (n = 1 showed SD; n = 2 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Significant association: (n = 3 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	No clear association: (n = 1 showed SD; n = 2 showed NSD)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)
Finance or health insurance	No clear association: (n = 2 showed SD; n = 6 showed NSD)	No clear association: (n = 4 showed SD; n = 4 showed NSD)	No clear association: (n = 7 showed SD^95,98,113; n = 1 showed NSD)	No significant association: (n = 2 showed NSD)	Significant association: (n = 1 showed SD)	No clear association: (n = 5 showed SD; n = 4 showed NSD)	No significant association: (n = 1 showed NSD)	No significant association: (n = 2 showed NSD)	No clear association: (n = 4 showed SD; n = 4 showed NSD)	Not studied: (n = 0)	No clear association: (n = 2 showed SD; n = 2 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Significant association: (n = 2 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)
Health literacy	No clear association: (n = 1 showed SD; n = 5 showed NSD)	No clear association: (n = 1 showed SD; n = 2 showed NSD)	No clear association: (n = 2 showed SD; n = 2 showed NSD)	Significant association: (n = 1 showed SD)	No clear association: (n = 1 showed SD; n = 1 showed NSD)	Significant association: (n = 2 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	No clear association: (n = 2 showed SD; n = 2 showed NSD)	Not studied: (n = 0)	No clear association: (n = 4 showed SD; n = 1 showed NSD)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)
Health status	No clear association: (n = 5 showed SD; n = 2 showed NSD)	No clear association: (n = 2 showed SD; n = 1 showed NSD)	No clear association: (n = 3 showed SD; n = 3 showed NSD)	Significant association: (n = 3 showed SD)	No clear association: (n = 2 showed SD; n = 4 showed NSD)	Not studied: (n = 0)	Significant association: (n = 1 showed SD)	No clear association: (n = 6 showed SD; n =11 showed NSD)	No clear association: (n = 1 showed SD; n = 1 showed NSD)	Significant association: (n = 4 showed SD)	No clear association: (n = 5 showed SD; n = 2 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)
Healthcare engagement	Not studied: (n = 0)	No significant association (n = 1 showed NSD)	No clear association: (n = 1 showed SD; n = 1 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)
Patient-centered care	No clear association: (n = 2 showed SD; n = 2 showed NSD)	No significant association: (n = 5 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	No clear association: (n = 2 showed SD; n = 4 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)
Preventative care	No significant association: (n = 1 showed NSD)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)	Significant association: (n = 1 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)
Quality of Life	Not studied: (n = 0)	Significant association: (n = 5 showed SD)	Significant association: (n = 1 showed SD))	Not studied: (n = 0)	Not studied: (n = 0)	No clear association: (n = 2 showed SD; n = 3 showed NSD)	Significant association: (n = 1 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Significant association: (n = 1 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)
Quality of Care	No significant association: (n = 1 showed NSD)	No significant association: (n = 1 showed NSD)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)	No significant association: (n = 1 showed NSD)	Significant association: (n = 1 showed SD)	No significant association: (n = 1 showed NSD)	No significant association: (n = 1 showed NSD)	No clear association: (n = 1 showed SD; n = 1 showed NSD)	Not studied: (n = 0)	No clear association: (n = 2 showed SD; n = 1 showed NSD)	Significant association: (n = 4 showed SD))	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)
Satisfaction	No significant association” (n = 1 showed NSD)	Significant association: (n = 1 showed SD)	Significant association: (n = 1 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	Significant association: (n = 1 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)	No significant association: (n = 2 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)
Self-management or self-efficacy	No clear association: (n = 2 showed SD; n = 2 showed NSD)	No clear association: (n = 3 showed SD; n = 4 showed NSD)	No clear association: (n = 3 showed SD; n = 3 showed NSD)	Not studied: (n = 0)	Significant association: (n = 1 showed SD)	Significant association: (n = 1 showed SD)	No significant association: (n = 1 showed NSD)	No significant association: (n = 3 showed NSD)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)	No significant association: (n = 5 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)
Transfer timing	Not studied: (n = 0)	Significant association: (n = 2 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	No clear association: (n = 1 showed SD; n = 1 showed NSD)	Not studied: (n = 0)	Significant association: (n = 2 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)
Transfer completion	Significant association: (n = 3 showed SD)	Significant association: (n = 2 showed SD)	Significant association: (n = 1 showed SD)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)	Significant association: (n = 1 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	Significant association: (n = 1 showed SD)	Not studied: (n = 0)	Significant association: (n = 1 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)
Transition education	No clear association: (n = 8 showed SD; n = 5 showed NSD)	No clear association: (n = 4 showed SD; n = 5 showed NSD)	No clear association: (n = 4 showed SD; n = 6 showed NSD)	No significant association: (n = 2 showed NSD)	No significant association: (n = 1 showed NSD)	No clear association: (n = 7 showed SD; n = 4 showed NSD)	No clear association: (n = 1 showed SD; n = 1 showed NSD)	No significant association: (n = 1 showed NSD)	No clear association: (n = 1 showed SD; n = 6 showed NSD)	Not studied: (n = 0)	No clear association: (n = 1 showed SD; n = 4 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Significant association: (n = 1 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)
Transition planning or preparation	No clear association: (n = 7 showed SD; n = 12 showed NSD)	No clear association: (n = 11 showed SD; n = 7 showed NSD)	No clear association: (n = 9 showed SD; n = 8 showed NSD)	No significant association: (n = 3 showed NSD)	No clear association: (n = 3 showed SD; n = 2 showed NSD)	Significant association: (n = 9 showed SD)	No clear association: (n = 2 showed SD; n = 1 showed NSD)	No clear association: (n = 1 showed SD; n = 3 showed NSD)	No clear association: (n = 9 showed SD; n = 8 showed NSD)	Not studied: (n = 0)	No clear association: (n = 1 showed SD; n = 6 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Significant association: (n = 6 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)
Transition readiness	No significant association: (n = 9 showed NSD)	No clear association: (n = 6 showed SD; n = 8 showed NSD)	No significant association: (n = 1 showed NSD)	No clear association: (n = 1 showed SD; n = 1 showed NSD)	No clear association: (n = 1 showed SD; n = 4 showed NSD)	No clear association: (n = 4 showed SD^66,72,113; n = 1 showed NSD)	Not studied: (n = 0)	No clear association: (n = 1 showed SD; n = 2 showed NSD)	No clear association: (n = 1 showed SD; n = 2 showed NSD)	Not studied: (n = 0)	No clear association: (n = 1 showed SD; n = 5 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	No significant association: (n = 1 showed NSD)	No clear association: (n = 3 showed SD; n = 4 showed NSD)	Not studied: (n = 0)

	Race and Ethnicity	Gender	Insurance Status	Geographic Location	Childhood Environment	Condition Type	Condition Severity	Comorbidity	Income	Immigration	Education	Employment	Food Access	Primary Language	Health Literacy	Stigma
Access to care	No clear association: (n = 2 showed SD; n = 3 showed NSD)	No clear association: (n = 3 showed SD; n = 2 showed NSD)	No clear association: (n = 4 showed SD; n = 1 showed NSD)	No clear association: (n = 5showed SD; n = 1 showed NSD)	Not studied: (n = 0)	No clear association: (n = 2 showed SD; n = 1 showed NSD)	No significant association: (n = 1 showed NSD)	Significant association: (n = 1 showed SD)	No clear association: (n = 3 showed SD; n = 2 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)
Acute care utilization	No clear association: (n = 5 showed SD; n = 5 showed NSD)	No clear association: (n = 8 showed SD; n = 6 showed NSD)	Significant association: (n = 5 showed SD)	No clear association: (n = 4 showed SD; n = 7 showed NSD)	Significant association: (n = 1 showed SD)	Significant association: (n = 2 showed SD)	No clear association: (n = 7 showed SD; n = 2 showed NSD)	No clear association: (n = 3 showed SD; n = 5 showed NSD)	No clear association: (n = 2 showed SD; n = 1 showed NSD)	Not studied: (n = 0)	No clear association: (n = 1 showed SD; n = 5 showed NSD)	Not studied: (n = 0)	No clear association: (n = 2 showed SD; n = 1 showed NSD)	Not studied: (n = 0)	No clear association: (n = 1 showed SD; n = 2 showed NSD)	Not studied (n = 0)
Adherence to Treatment	No significant association: (n = 2 showed NSD)	No significant association: (n = 3 showed NSD)	Not studied (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Significant association: (n = 1 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	No clear association (n = 1 showed SD; n = 1 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Significant association (n = 1 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)
Attendance	Significant association: (n = 1 showed SD)	No clear association: (n = 1 showed SD; n = 2 showed NSD)	Significant association: (n = 1 showed SD)	Significant association: (n = 1 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Significant association: (n = 2 showed SD)	No clear association: (n = 2 showed SD; n = 1 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)
Autonomy	No clear association: (n = 4 showed SD; n = 7 showed NSD)	No clear association (n = 7 showed SD^66,106,113; n = 5 showed NSD)	No clear association (n = 6 showed SD^72,113; n = 2 showed NSD)	Significant association (n = 1 showed SD)	No significant association: (n = 4 showed NSD)	Significant association: (n = 8 showed SD)	No clear association: (n = 1 showed SD; n = 1 showed NSD)	Significant association: (n = 3 showed SD)	No clear association: (n = 4 showed SD; n = 4 showed NSD)	Not studied: (n = 0)	No clear association: (n = 2 showed SD; n = 6 showed NSD)	Significant association: (n = 2 showed SD)	Not studied: (n = 0)	No clear association: (n = 1 showed SD; n = 1 showed NSD)	Significant association: (n = 3 showed SD)	Not studied: (n = 0)
Communication	Not studied: (n = 0)	Significant association: (n = 1 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)
Continuity of care	No significant association: (n = 3 showed NSD)	No clear association: (n = 4 showed SD; n = 3 showed NSD)	No clear association: (n = 1 showed SD; n = 2 showed NSD)	Significant association: (n = 1 showed SD)	Significant association: (n = 1 showed SD)	Significant association: (n = 1 showed SD)	Significant association: (n = 3 showed SD)	No clear association: (n = 1 showed SD; n = 2 showed NSD)	Significant association (n = 3 showed SD)	Not studied: (n = 0)	No significant association (n = 2 showed NSD)	Significant association: (n = 2 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Significant association: (n = 1 showed SD)
Disease knowledge	No clear association: (n = 1 showed SD; n = 3 showed NSD)	No clear association: (n = 2 showed SD; n = 4 showed NSD))	Significant association: (n = 1 showed SD)	No clear association: (n = 3 showed SD; n = 1 showed NSD)	Not studied: (n = 0)	No clear association: (n = 1 showed SD; n = 2 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Significant association: (n = 3 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	No clear association: (n = 1 showed SD; n = 2 showed NSD)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)
Finance or health insurance	No clear association: (n = 2 showed SD; n = 6 showed NSD)	No clear association: (n = 4 showed SD; n = 4 showed NSD)	No clear association: (n = 7 showed SD^95,98,113; n = 1 showed NSD)	No significant association: (n = 2 showed NSD)	Significant association: (n = 1 showed SD)	No clear association: (n = 5 showed SD; n = 4 showed NSD)	No significant association: (n = 1 showed NSD)	No significant association: (n = 2 showed NSD)	No clear association: (n = 4 showed SD; n = 4 showed NSD)	Not studied: (n = 0)	No clear association: (n = 2 showed SD; n = 2 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Significant association: (n = 2 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)
Health literacy	No clear association: (n = 1 showed SD; n = 5 showed NSD)	No clear association: (n = 1 showed SD; n = 2 showed NSD)	No clear association: (n = 2 showed SD; n = 2 showed NSD)	Significant association: (n = 1 showed SD)	No clear association: (n = 1 showed SD; n = 1 showed NSD)	Significant association: (n = 2 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	No clear association: (n = 2 showed SD; n = 2 showed NSD)	Not studied: (n = 0)	No clear association: (n = 4 showed SD; n = 1 showed NSD)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)
Health status	No clear association: (n = 5 showed SD; n = 2 showed NSD)	No clear association: (n = 2 showed SD; n = 1 showed NSD)	No clear association: (n = 3 showed SD; n = 3 showed NSD)	Significant association: (n = 3 showed SD)	No clear association: (n = 2 showed SD; n = 4 showed NSD)	Not studied: (n = 0)	Significant association: (n = 1 showed SD)	No clear association: (n = 6 showed SD; n =11 showed NSD)	No clear association: (n = 1 showed SD; n = 1 showed NSD)	Significant association: (n = 4 showed SD)	No clear association: (n = 5 showed SD; n = 2 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)
Healthcare engagement	Not studied: (n = 0)	No significant association (n = 1 showed NSD)	No clear association: (n = 1 showed SD; n = 1 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)
Patient-centered care	No clear association: (n = 2 showed SD; n = 2 showed NSD)	No significant association: (n = 5 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	No clear association: (n = 2 showed SD; n = 4 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)
Preventative care	No significant association: (n = 1 showed NSD)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)	Significant association: (n = 1 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)
Quality of Life	Not studied: (n = 0)	Significant association: (n = 5 showed SD)	Significant association: (n = 1 showed SD))	Not studied: (n = 0)	Not studied: (n = 0)	No clear association: (n = 2 showed SD; n = 3 showed NSD)	Significant association: (n = 1 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Significant association: (n = 1 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)
Quality of Care	No significant association: (n = 1 showed NSD)	No significant association: (n = 1 showed NSD)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)	No significant association: (n = 1 showed NSD)	Significant association: (n = 1 showed SD)	No significant association: (n = 1 showed NSD)	No significant association: (n = 1 showed NSD)	No clear association: (n = 1 showed SD; n = 1 showed NSD)	Not studied: (n = 0)	No clear association: (n = 2 showed SD; n = 1 showed NSD)	Significant association: (n = 4 showed SD))	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)
Satisfaction	No significant association” (n = 1 showed NSD)	Significant association: (n = 1 showed SD)	Significant association: (n = 1 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	Significant association: (n = 1 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)	No significant association: (n = 2 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)
Self-management or self-efficacy	No clear association: (n = 2 showed SD; n = 2 showed NSD)	No clear association: (n = 3 showed SD; n = 4 showed NSD)	No clear association: (n = 3 showed SD; n = 3 showed NSD)	Not studied: (n = 0)	Significant association: (n = 1 showed SD)	Significant association: (n = 1 showed SD)	No significant association: (n = 1 showed NSD)	No significant association: (n = 3 showed NSD)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)	No significant association: (n = 5 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)
Transfer timing	Not studied: (n = 0)	Significant association: (n = 2 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	No clear association: (n = 1 showed SD; n = 1 showed NSD)	Not studied: (n = 0)	Significant association: (n = 2 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)
Transfer completion	Significant association: (n = 3 showed SD)	Significant association: (n = 2 showed SD)	Significant association: (n = 1 showed SD)	No significant association: (n = 1 showed NSD)	Not studied: (n = 0)	Significant association: (n = 1 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	Significant association: (n = 1 showed SD)	Not studied: (n = 0)	Significant association: (n = 1 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)	Not studied: (n = 0)
Transition education	No clear association: (n = 8 showed SD; n = 5 showed NSD)	No clear association: (n = 4 showed SD; n = 5 showed NSD)	No clear association: (n = 4 showed SD; n = 6 showed NSD)	No significant association: (n = 2 showed NSD)	No significant association: (n = 1 showed NSD)	No clear association: (n = 7 showed SD; n = 4 showed NSD)	No clear association: (n = 1 showed SD; n = 1 showed NSD)	No significant association: (n = 1 showed NSD)	No clear association: (n = 1 showed SD; n = 6 showed NSD)	Not studied: (n = 0)	No clear association: (n = 1 showed SD; n = 4 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Significant association: (n = 1 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)
Transition planning or preparation	No clear association: (n = 7 showed SD; n = 12 showed NSD)	No clear association: (n = 11 showed SD; n = 7 showed NSD)	No clear association: (n = 9 showed SD; n = 8 showed NSD)	No significant association: (n = 3 showed NSD)	No clear association: (n = 3 showed SD; n = 2 showed NSD)	Significant association: (n = 9 showed SD)	No clear association: (n = 2 showed SD; n = 1 showed NSD)	No clear association: (n = 1 showed SD; n = 3 showed NSD)	No clear association: (n = 9 showed SD; n = 8 showed NSD)	Not studied: (n = 0)	No clear association: (n = 1 showed SD; n = 6 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	Significant association: (n = 6 showed SD)	Not studied: (n = 0)	Not studied: (n = 0)
Transition readiness	No significant association: (n = 9 showed NSD)	No clear association: (n = 6 showed SD; n = 8 showed NSD)	No significant association: (n = 1 showed NSD)	No clear association: (n = 1 showed SD; n = 1 showed NSD)	No clear association: (n = 1 showed SD; n = 4 showed NSD)	No clear association: (n = 4 showed SD^66,72,113; n = 1 showed NSD)	Not studied: (n = 0)	No clear association: (n = 1 showed SD; n = 2 showed NSD)	No clear association: (n = 1 showed SD; n = 2 showed NSD)	Not studied: (n = 0)	No clear association: (n = 1 showed SD; n = 5 showed NSD)	Not studied: (n = 0)	Not studied: (n = 0)	No significant association: (n = 1 showed NSD)	No clear association: (n = 3 showed SD; n = 4 showed NSD)	Not studied: (n = 0)

N, number of transition outcomes studied; NSD, no significant differences; SD, significant differences. Significance is defined as P < .05. Significant associations are P < .05; nonsignificant associations are P > .05; unclear associations are P > .05 and some showed P < .05. Full results are displayed in Appendix C.

View Large

Discussion

This scoping review identified 101 studies looking at the relationship between SSDOH and outcomes for youth with chronic conditions transitioning to adult care. Existing literature has focused on the association between transition outcomes and gender (n = 60 studies), race and ethnicity (n = 41), insurance status (n = 30), and income (n = 29). Few studies explored transition outcomes for youth who have low literacy, belong to rural communities, are immigrants and refugees, speak a primary language that is not English, experience food insecurity, and those who have experiences in the foster care and judicial systems. Finally, no research explored the impact of the structural drivers of health nor discrimination on transition to adult care for youth who are experience marginalization.

Racial and Ethnic Inequities in Transition

We identified significant inequities between participants’ racial and ethnic identification and both transfer completion and appointments attended following their transition to adult care. Additionally, although a clear association was not identified, several studies demonstrated race-based inequities related to health status during transition. Specifically, higher rates of mortality and shorter time to hospitalization were described among Black and Hispanic youth when compared with white youth.^51,52 Higher prevalence of comorbid mental health conditions were also reported in Indigenous youth when compared with white youth.⁵³

The causes for these observed racial and ethnic inequities are likely complex and multifactorial.⁵⁴ Health inequities are perpetuated by structural factors that youth from racial and ethnic minority groups disproportionately encounter, including racism and discrimination, which have known negative effects on physical and mental health outcomes.^55,56 Specifically, race-based discrimination has downstream effects on the social drivers of health, such as living in low-income communities,⁵⁷ educational attainment,⁵⁸ and health literacy,⁵⁹ which all affect access to resources needed to support healthcare needs.^57,58,60,61 Further, structural factors have been linked to insurance-related disparities in racialized youth, which become more pronounced during the transitional age period of 18 to 24 years old when insurance eligibility changes occur.⁶² These challenges are likely exacerbated for racialized youth who are also navigating the healthcare system with a chronic health condition and may contribute to deterioration in health status, particularly during the time of transition.⁶³

The effects of racism and oppression also shape the experiences of racialized youth, including mistrust of healthcare systems, as well as contribute to fear of race and ethnicity-based discrimination and stigmatization by providers.^64,65 Further, many healthcare providers do not have adequate training or competency in cultural humility.⁶⁵ For youth who have experienced race-based discrimination both inside and outside of the healthcare setting, trust in healthcare providers can be difficult to establish. When trust in a pediatric provider is tenuous or absent, youth may not believe the provider has their best interests at heart and thus may not follow their recommendations around transition planning. Conversely, where a young person has built a trusting relationship with a pediatric healthcare provider, rebuilding new trust with a new adult healthcare provider may require significant effort on the young person’s behalf as well as a degree of risk given their potentially negative past experiences. This trust may not necessarily translate to a new healthcare provider. Youth may feel defeated or overwhelmed at the idea of trying to go through this process again and avoid connecting to the new provider in the adult system altogether.

Gender and Sexual Identity Inequities in Transition

Of the studies examining gender differences in transition, female participants were more likely to successfully transition to adult care, and the transfer occurred over a significantly shorter period of time, when compared with male participants.^40,41 Additionally, female participants reported lower quality of life before transfer, however these differences disappeared following transition to adult care.³⁸ Further, 3 studies demonstrated female participants received more transition planning and preparation.^66–68 Existing research has also reported increased health-seeking behaviors among female youth, such as scheduling more frequent appointments, greater self-management skills, and increased likelihood to seek health-related information, which may partly explain these differences.^69,70 However, this relationship was not consistent across all studies reviewed. Some studies indicated male participants had improved transition planning and preparation compared with female participants, including increased likelihood of discussing transfer with their healthcare provider and receiving the services necessary to transition.^71,72 Additionally, although significant differences were identified between genders in terms of transfer satisfaction and communicating skills with their healthcare provider, the direction of these associations was not clear.^37,39

No transition outcomes were studied in 2SLGBTQ+ youth, and 1 study reported including gay, lesbian, bisexual, and questioning participants.⁷³ Gender and sexual identities are important drivers in healthcare access and quality of care, with many 2SLGBTQ+ individuals experiencing significant discrimination by healthcare providers (eg, stigma, refusal of care). 2SLGBTQ+ individuals are often subject to sexism, transphobia, and homophobia, which negatively affect mental and physical health outcomes.^74–78 Although many community-based organizations are exploring strategies to facilitate transition to adult care for 2SLGBTQ+ youth, further research is needed to identify gender-affirming and antioppressive practices in clinical and academic spaces to support equitable access and delivery of transitional care.

Insurance Status and Income Inequities in Transition

Income, socioeconomic status, and insurance status are core interdependent determinants impacting access to quality healthcare services. Of the studies examining these drivers, public medical insurance was significantly associated with increased acute care utilization (ie, emergency department visits, hospitalizations), compared with private insurance.^43,44 Additionally, youth without health insurance and those living in low-income neighborhoods were less likely to attend follow-up care for ongoing management of their chronic illness and more likely to have lower disease-specific knowledge.^45,46,50,79 Two studies also identified that youth living in low-income neighborhoods were significantly more likely to experience a delay between pediatric and adult care visits, as well as not receive follow-up adult care altogether.^41,49 They were also less likely to receive transition interventions, including discussing adult healthcare needs, reviewing changes to health insurance, connecting with an adult provider, and receiving ongoing management of their chronic conditions.⁴⁰

Poverty represents a significant barrier to achieving continuous, timely care between services, particularly in nonpublicly funded healthcare systems where access to healthcare services may incur an expense to youth and/or their families. However, there are additional costs associated with accessing care, including paying for transportation or lost income secondary to taking time from work to attend medical appointments. Low socioeconomic status also increases the risk of morbidity in adolescence (eg, obesity, sexually transmitted infections, chronic illness) because of a combination of structural factors, including limited access to resources needed to avoid or mitigate health risks, as well as access to nutritional foods and safe shelter.^80–85 A recent study of the perspectives of youth with childhood-onset disabilities and their families following transition from pediatric to adult rehabilitation services found that access to financial resources hindered the ability to access high-cost care services, such as respite and rehabilitation services, as well as necessary specialized equipment needed for activities of daily living, such accessing a wheelchair.⁸⁶ Further, access to free or low-cost healthcare services were often limited by strict eligibility criteria, such as youth age and medical diagnosis, thus perpetuating inequities in access to financial resources for youth and their families.⁸⁶ Finally, low socioeconomic status poses a greater risk of losing access to health insurance during young adulthood, which may exacerbate discontinuity of care and contribute to worsened health outcomes.^18,87,88 It is important to note, however, that the associations between insurance status and income and transition outcomes identified by this scoping review are likely context-specific and findings may not be generalizable across jurisdictions or countries.

Future Research, Practices, and Policies

To mitigate health inequities experienced by marginalized youth during transition to adult care, collective efforts are needed from knowledge users including youth, caregivers, clinicians, researchers, health system leaders, and decision-makers. Future research should focus on the less studied SSDOH, including geographic location, foster care, language, immigration and refugee status, stigma, and food access. A better understanding of these associations may help healthcare teams develop individualized transition interventions and promote equity improved through focused quality improvement initiatives.⁸⁹ System-level changes are also needed, such as policies that improve access to primary care and community services, including housing, education, employment, and other social support services.^14,90 Advocacy on local and system-levels can be used as a tool to promote awareness of the inequities during transition and call for the implementation of equitable policies and practices.

Future research and advocacy should use an intersectional health equity lens, which involves understanding how race, gender, social class, and other characteristics intersect to create unique forms of discrimination and oppression that impact transition outcomes.⁹¹ Researchers and policymakers should partner with youth and families who have experienced structural marginalization to understand and integrate their perspectives to shape research design, interpretation, and development of new practices and policies. Finally, strengths-based research approaches are needed to understand the youth-level transition skills (ie, resilience) and system-level facilitators (ie, allocation of resources) that lead to successful outcomes for youth who experience structural marginalization transitioning to adult care.

Limitations

This review was limited to primary research studying SSDOH and transition outcomes, as outlined in the original study aim, research question, and/or hypothesis. The analysis was restricted to articles in English, which may have excluded relevant literature. A dedicated gray literature search was not conducted because of feasibility constraints. We had systematically searched for gray literature using the Gray Matters Framework in a previously related review and the yield was very low.²⁵ Thus, given the feasibility constraints and potential low yield of results, we decided not to pursue a dedicated gray literature search. Finally, identifying the direction and strength of the association between SSDOH and outcomes through a meta-analysis was not within the methodologic scope of a scoping review.

Conclusions

Evidence to date suggests gender, race and ethnicity, insurance status, and income are significantly associated with health outcomes for youth transitioning to adult care. Further understanding of these associations is needed to improve the quality of transition care, inform intervention design, and promote improved equity in service delivery. Future research examining the associations between SSDOH, discrimination, and social marginalization on transition outcomes should consider multiple forms of oppression, including racism, sexism, homophobia, ableism, and others, using an intersectional health equity lens to understand and address health inequities in transition.

Acknowledgments

The authors thank Dr Abi Sriharan, MSc System Leadership and Innovation (SLI) Program Director, who provided feedback on this scoping review for partial fulfilment of the MSc SLI program.

Drs Toulany, Munce, Gajaria, Tami, and Ms Pidduck conceptualized the design and methods of this systematic review, revised the manuscript, and approved the final manuscript as submitted; Ms Bailey and Ms Avolio synthesized the literature, drafted the initial manuscript, revised the manuscript, and approved the final manuscript as submitted; Ms Lo provided methodologic expertise, synthesized the literature, revised the manuscript, and approved the final manuscript as submitted; Ms Martens, Ms Mooney, and Ms Greer conceptualized the design and methods of this systematic review based on lived experience as young adult partners, revised the manuscript, and approved the final manuscript as submitted; Ms Cunningham developed the search strategies and provided methodologic expertise; and all authors provided input and guidance on study design, approved the final manuscript as submitted, and agree to be accountable for all aspects of this systematic review.

This scoping review was registered with the Open Science Foundation (https://doi.org/10.17605/OSF.IO/R78TV). A protocol for this scoping review was not published.

DATA SHARING STATEMENT: Detailed search strategies, data extraction tables from included studies, and social and structural drivers of health definitions used to guide data extraction can be found in supplementary materials. Data abstraction templates may be available upon request.

FUNDING: This scoping review was supported by the Edwin S.H. Leong Centre for Healthy Children Studentship, awarded to Katherine Bailey and Dr Alene Toulany; and the other authors received no additional funding.

CONFLICT OF INTEREST DISCLOSURES: The authors have indicated they have no potential conflicts of interest relevant to this article to disclose.

CI: confidence interval
HR: hazard ratio
OR: odds ratio
PRISMA-ScR: Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols Extension for Scoping Reviews
SSDOH: social and structural drivers of health

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This is an open access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits noncommercial, distribution, and reproduction in any medium, provided the original author and source are credited.

Social and Structural Drivers of Health and Transition to Adult Care

Methods

Search Strategy

Eligibility Criteria

Data Abstraction and Synthesis

Definition Clarifications

Results

Study Characteristics and Population

Transition Outcome Themes

Social and Structural Drivers of Health

Associations Between SSDOH and Transition Outcomes

Discussion

Racial and Ethnic Inequities in Transition

Gender and Sexual Identity Inequities in Transition

Insurance Status and Income Inequities in Transition

Future Research, Practices, and Policies

Limitations

Conclusions

Acknowledgments

References

Supplementary data

Comments

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Social and Structural Drivers of Health and Transition to Adult Care

Methods

Search Strategy

Eligibility Criteria

Data Abstraction and Synthesis

Definition Clarifications

Results

Study Characteristics and Population

Transition Outcome Themes

Social and Structural Drivers of Health

Associations Between SSDOH and Transition Outcomes

Discussion

Racial and Ethnic Inequities in Transition

Gender and Sexual Identity Inequities in Transition

Insurance Status and Income Inequities in Transition

Future Research, Practices, and Policies

Limitations

Conclusions

Acknowledgments

References

Supplementary data

Comments

Citing articles via

Email alerts

Journals

News

Solutions

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