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Transitioning from Pediatric to Adult Care in Sickle Cell Disease: Patient and Caregiver Feedback

Introduction: Advances in pediatric sickle cell disease (SCD) care have resulted in children surviving into adulthood. Transition is a time when continuity of care is essential to prevent high rates of morbidity and mortality in adolescents and young adults (AYA). This descriptive study evaluated patients and caregivers’ experience with transition.

Methods: Survey was conducted with AYA 20-21 years of age who transitioned from pediatric to adult care using Feedback and Post-assessment surveys.

Results: Fifty-seven AYA attended transition and 15 did not from January 2018-January 2021. Eighty-seven percent who attended felt prepared to change to adult providers with 89% having seen their adult provider since leaving pediatric care.

Discussion: The preparation received promoted self-efficacy for AYA to manage their own health care. AYA who did not attend clinic also did very well. The transition process should start early so AYA have the confidence needed to transition from pediatric to adult health care.