Barriers to Transition from Pediatric to Adult Care in Adolescents and Young Adults with Sickle Cell Disease: A Mixed-Method Study on the Impact of Systems of Inequity

Introduction: Although over 95% of children with sickle cell disease (SCD) live into adulthood, the transition period between pediatric and adult medical care holds the highest rate of morbidity and mortality across the lifespan. Transition is also characterized by systemic inequities including limited access to care, implicit bias, and disease stigma. Many adolescents and young adults (AYA) are not successful in transferring to an adult hematology provider, further compounding barriers to care. The purpose of this study was to characterize barriers and facilitators of the transition from pediatric to adult care with an emphasis on how systems of inequity impact AYA with SCD transition readiness factors.

Method: Pediatric and transferred AYA completed questionnaires and then participated in a semi-structured individual interview or focus group. Questionnaires assessed transition barriers by asking participants to rate the top 3 challenges to transition from a list of common transition-related stressors. In addition, AYA responded to two questions inquiring about the impact of discrimination on healthcare and transition with the option of elaborating in open-ended text responses, and they completed the Perceptions of Racism in Children and Youth (PRaCY) instrument which describes AYA experiences with discrimination outside of the medical system. Individual and focus group interviews were used to obtain detailed descriptions and examples of barriers to transition and how systems of inequity (e.g., racism, socioeconomic disadvantage, etc.) impact AYA expectations or experiences with adult care. Quantitative data were assessed using means and standard deviations. Qualitative data from open-ended questionnaire responses and interviews were analyzed using a deductive-inductive approach via a revised version of the Social-ecological Model of AYA Readiness for Transition (SMART) informed by the Health Equity Framework. Overlaps among systems of inequity and other transition barriers are reported here.

Results: Ten AYA with SCD receiving pediatric hematology care (M_age = 18.6; 5 boys, 4 girls, 1 nonbinary; 9 HbSS/Sβ⁰, 1 HbSC) and 10 AYA with SCD who had transferred to adult care (M_age = 23, 2 men, 8 women; 7 HbSS, 3 HbSC/SD; M years since last pediatric hematology visit/transfer = 1.17) completed questionnaires. All AYA identified as Black or African American, and one AYA also identified as mixed-race. AYA ranked a comprehensive range of top 3 challenges to transition (see Figure 1). Systems of inequity was among the most endorsed barriers alongside skills in being independent in their healthcare, adult provider relationships, beliefs/expectations, and insurance. Overall, AYA reported an average of 2.0 (SD = 1.63) experiences with discrimination on the PRaCY (pediatric: M = 1.78, SD = 1.30, range = 0 to 4; transferred: M = 2.20, SD = 1.93, range = 0 to 6). Further, 10% of AYA reported that their personal identity has impacted their healthcare, and 20% endorsed expecting or experiencing their personal identity (i.e., race, gender, income, sexual orientation) negatively impacting their transition to adult care.

Of the participants in the questionnaire portion of the study, 95% (10 pediatric and 9 transferred) were interviewed. All AYA reported that systems of inequity are relevant to transition, though transferred AYA provided more detailed examples of how systemic inequities amplify transition barriers than pediatric patients. Qualitative themes of how systems of inequity impact the quantitatively most endorsed barriers are described in Table 1. Themes emphasize the impact of inequities related to racism, sexism, and socioeconomic disadvantage during engagement in adult-oriented care.

Conclusions: AYA across pediatric conditions experience barriers to transition; however, these barriers are amplified for AYA with SCD due to the pervasive impact of systems of inequity. Findings suggest that patients might under-report experiences with systemic inequities on quantitative measures relative to qualitative discussions. Systems of inequity should be incorporated into the SMART framework as a pre-existing factor to promote health equity during transition. Institutional and clinician-level interventions should address interpersonal barriers, implicit bias, and stigma, yet a focus on systemic change is necessary to reduce the compounded burden for this population.

Smith-Whitley:Global Blood Therapeutics: Current Employment, Current equity holder in private company.