Social and Structural Drivers of Health and Transition to Adult Care

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.

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.

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.).

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).

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.

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.

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.

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%]).

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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