Transition and clinical outcomes among AYA with sickle cell disease

Transition clinics in sickle cell disease (SCD) were developed to address the gap in care and poor outcomes that frequently occur in adolescents and young adults (AYA) with SCD. Our retrospective study evaluated the outcomes of a multi-disciplinary SCD transition program at the Tulane University Sickle Cell Center of Southern Louisiana.

49 patients (39 who participated in the transition clinic, and 10 patients who transferred directly from pediatric to adult care) aged 18-25 with SCD who received care between January 2021 to November 2024 were included in the analysis. Socio-demographic data was collected as well as information on transition metrics, mental health comorbidities, and acute care utilization.

At the time of analysis, 30.7% (n = 12) of patients in the transition clinic had transferred to adult care. Age ≥ 21, completing high school and attending 5 or more transition visits were significantly associated with successful adult care transfer completion (p < 0.0001, p = 0.017, p = 0.0407). Across both groups, those with an established mental health diagnosis had significantly higher levels of hospital admissions (B = 5.55, SE = 1.67, p = .002). Moreover, compared to those who are in high school, those who completed high school had significantly lower levels of hospital admissions (B = -5.02, SE = 2.26, p = .03). There was no statistically significant difference in acute care utilization, medication compliance, or presence of SCD complications between both groups.

Higher levels of educational attainment and consistent engagement with transition programming positively impact successful adult care transfer in AYA with SCD. Mental health and wellbeing has a significant impact on morbidity and hospitalizations in AYA with SCD and represents an area for further research and intervention.