Transition for Youth with Sickle Cell Disease: Qualitative Perspectives

Sickle cell disease (SCD) presents unique challenges for youth transitioning from pediatric to adult health care systems. This study aimed to identify and address unmet needs in transition readiness for youth with SCD in Ontario through participatory design sessions involving patients, health care providers (HCPs), families, and caregivers. Thematic analysis of a participatory design session revealed significant barriers to successful transition: lack of education and awareness among adult HCPs, limitations in health care delivery, navigating multiple life transitions, and racial bias in health care. These barriers contribute to delayed or inadequate care, exacerbating the challenges faced by youth with SCD during the transition period. Building upon these findings, a low-fidelity prototype was developed, culminating in a digital educational module framework tailored for HCPs focusing on SCD transition care. This framework aims to equip providers with the knowledge and resources needed to effectively support transitioning youth with SCD. Successful transition is vital for the health and wellbeing of youth with SCD, and addressing the identified barriers through comprehensive interventions is essential for optimizing transition experiences and outcomes.