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.