Understanding Barriers to Transition From Pediatric to Adult Care Among Young Adults With Sickle Cell Disease to Develop a Transition Mentor Program

Objective: Patients with sickle cell disease require lifelong comprehensive care, necessitating patient compliance with primary care appointments, specialty clinical visits, medications, transfusions, and regular health maintenance. As patients transition from pediatric care to adult care, they are at risk for lapses in care that can result in serious complications, making the period of transition a medically vulnerable time. The goal of this study was to use formative interviews to identify targets for a mentoring intervention to improve transition outcomes. Methods: Ten young adults preparing to transition and 10 young adults within 10 years of their transition (ages 18-30 years) completed a semistructured interview. Interviews were analyzed using template thematic analysis, with the Social-Ecological Model of Adolescent and Young Adult Readiness to Transition (SMART) framework as the a priori thematic framework. Results: Themes were consistent with the SMART framework components. Young adults identified self-advocacy, provider communication, and disease knowledge as important targets for intervention. Participants were receptive to having a medical student as a mentor and also viewed it as an opportunity to educate health professionals. Conclusions: The SMART framework and patient interviews were useful in designing a transition mentor program to meet the needs of patients with sickle cell disease. Future research will evaluate the feasibility of this program.