Improving Transition of Emerging Adults with Sickle Cell Disease to Adult Care through a Multidisciplinary Process: The Development of a Transition Clinic to Support Transition Success

The transition period from pediatric to adult care is challenging for people with sickle cell disease (SCD). Emerging adults with SCD who do not successfully transition have increased acute care utilization, worsened disease severity, and are at risk for early death. Several patient-level and system-level factors impact success of transition. A structured process using tested interventions increases the success of transition for patients with chronic diseases. We sought to develop a multidisciplinary transition program for young adults with SCD using the Got Transition basic components of health care transition, including a dedicated “Transition Clinic.” We established a multidisciplinary transition program for emerging adults with SCD at Cincinnati Children's Hospital (CCHMC) in March 2019. We used QI methods to implement and track transition processes based on the customized Six Core Elements of the Health Care Transition Model (policy/guide, tracking and monitoring, readiness, planning, transfer of care, and transition completion) and the ASH transition toolkit for SCD. The transition team includes physicians, psychologists, nurse practitioners, social workers, and nurse care managers at the pediatric and adult SCD programs (CCHMC and University of Cincinnati) who meet regularly to discuss transitioning/transferring patients, patients who completed transfer, and topics related to transition. Patients are approached at age 14 with a goal to transfer to adult care at age 21. We implemented a “Transition Clinic” dedicated to addressing transition-specific issues (progress on TRAQ-derived goals, self-management, financial counseling, academic planning, introducing members of the adult team). Patients ≥ 18 y.o. are encouraged to attend at least one transition clinic before transfer of care. We measured the short-term success of transition by successfully completing a visit with adult provider within 6 months of the last pediatric visit. We collected data on patients who did and did not attend transition clinic. Between March 2019 and September 2022, 29 emerging adults reached age 21 and transferred to adult care. The mean age of transfer was 21.5 y.o. The patients' genotypes were: 20 HbSS, 7 HbSC, 1 HbSD and 1 HbS ß-thalassemia. Overall, 19/29 attended at least one transition clinic; 18/19 who attended transition clinic had follow up data from an adult facility compared to 5/10 who did not attend transition clinic. Of patients who attended transition clinic,