Impact of a transition program with navigator on loss to follow‐up, medication adherence, and appointment attendance in hemoglobinopathies

BACKGROUND: Transition from pediatric to adult care is a period of high risk for loss to follow-up, morbidity, and mortality in adolescents and young adults (AYA) with hemoglobinopathies. The purpose of this study was to determine whether a transition program with transition navigator (TN) reduced loss to follow-up and hospitalizations and improved medication adherence and appointment attendance compared with an unstructured transfer. PROCEDURE: A retrospective observational study compared all AYA with hemoglobinopathies who turned 18 one year prior to (n = 51) and one year after (n = 61) the initiation of the transition program. Data from one year prior to last pediatric appointment and one year following first adult appointment were collected from each patient. RESULTS: The transition program with TN reduced loss to follow-up from 29% to 7% (P = 0.034). A greater proportion of patients in the transition cohort maintained or improved adherence to hydroxyurea or iron chelation to ≥4 days/week; exposure to the program was independently associated with such improvement (P = 0.047). A trend toward improvement or maintenance of ≥90% attendance to appointments was observed (P = 0.096). Frequency of hospitalization was not significantly different between the two cohorts (P = 0.985). CONCLUSIONS: A transition program with TN significantly reduced loss to follow-up, and significantly improved and maintained fair to good medication adherence. Further analysis of economic benefit and patient satisfaction will be conducted.