Efficacy of a Health Care Transition Program for Patients with Sickle Cell Disease

Introduction: Unsuccessful transition from pediatric to adult care among youth with sickle cell disease (SCD) contributes to frequent disease complications and early death. The literature is sparse on longitudinal SCD transition program outcomes. The St. Jude SCD Transition to Adult Care Program started in 2007, is a comprehensive, co-located, and interdisciplinary program embedded in a larger SCD medical home. The objective of this study is to describe transfer rates, time to transfer, and maintenance of adult care over a 9-year period.

Methods: With St. Jude IRB approval, we conducted a retrospective review of the rate of matriculation in adult care, the latency time from leaving pediatric care and initiating adult care, and maintenance of engagement in adult care 12 and 24 months later. Eligibility criteria: 1) SCD diagnosis and 2) Completion of pediatric care between 2007 and 2016.

Results: Three hundred and sixty participants transferred to adult care over the study period. Mean age at transfer was 18 years. Matriculation in adult care within 6 months from leaving pediatric care substantially increased: 71% in 2007 to 93% in 2016. We observed a progressive reduction in the latency time from pediatric to adult care, from 12 months in 2007 to 1.5 months in 2016. Fifty-five percent (n=198) of youth who transitioned to the partner Methodist Comprehensive Sickle Cell Center (MCSCC) post-pediatric care continued to be followed by our program. Of these, 77% and 57% remained with the MCSCC 12 and 24 months after transfer to adult care, respectively.

Conclusions: The St. Jude SCD Transition to Adult Care Program demonstrated a gradual increase in transfer rates and a reduction in length of time-to-adult transfer since its creation. Adult care engagement declined over time and warrants future interventions. Improved health care transition outcomes could potentially translate into improved quality of life and greater longevity.