Evaluating a Pediatric to Adult Care Transition Program for Adolescents and Young Adults With Sickle Cell Disease: A Program Assessment at Duke University.

BACKGROUND

Only 33% to 53% of adolescents and young adults (AYAs) with sickle cell disease (SCD) complete the transition process to adult health systems.

OBJECTIVE

Examine transition-readiness practices in a pediatric SCD ambulatory clinic to identify strengths, gaps, and opportunities to enhance transition preparation for AYAs.

METHODS

A program evaluation using policy review and data from the American Society of Hematology (ASH) Transition Readiness Assessment Tool was analyzed, and current transition practices were evaluated using the Got Transition Framework.

RESULTS

Findings from the ASH tool showed strong knowledge of disease (M=3.26/4) and medication (M=3.33/4) but low confidence in scheduling appointments (M=2.24/4) and understanding insurance (M=1.71/4). Variability in transition readiness across domains and gaps in standardized assessment frequency and documentation were identified. Policy review revealed strengths in early transition education but limited operational guidance for readiness tracking and patient feedback.

DISCUSSION: Final program recommendations were (1) integration of the ASH tool into clinic policy with defined roles and assessment frequency; (2) development of age-based transition readiness benchmarks to support longitudinal monitoring and targeted interventions; and (3) implementation of voluntary exit interviews to capture patient-reported transition experiences and guide program improvement.