Objective: Adolescents and young adults (AYA) with sickle cell disease (SCD) experience high rates of acute care utilization and increased morbidity. At this high-risk time, they also face the need to transition from pediatric to adult services, which, if poorly coordinated, adds to heightened morbidity and acute care utilization. The study objective was to characterize the feasibility, acceptability, and short-term efficacy of a protocolized transition navigator (TN) intervention in AYA with SCD. Methods: We developed a protocolized TN intervention that used ecological assessment and motivational interviewing to assess transition readiness, identify goals, and remove barriers to transition, and to provide disease and pain management education and skills to AYAs with SCD. Results: Ninety-three percent (56/60) of enrolled individuals completed the intervention. Participation in the TN program was associated with significant improvement in mean transition readiness scores (3.58–4.15, P < .0001), disease knowledge scale (8.91–10.13, P < .0001), Adolescent Medication Barriers Scale (40.05–35.39, P = .003) and confidence in both disease (22.5–23.96, P = .048) and pain management (25.07–26.61, P = .003) for youth with SCD. Conclusion: The TN intervention was acceptable to youth with SCD, feasible to implement at an urban academic medical center, and addressed barriers to transition identified by the youth. Longer-term assessment is needed to determine if the TN intervention improved successful transfer to and retention in adult care.
- health care transition
- sickle cell disease
- young adult
ASJC Scopus subject areas
- Pediatrics, Perinatology, and Child Health