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

Abstract

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.

National Priorities for High-quality Rheumatology Transition Care for Youth in Canada

“…Working with partners and healthcare providers, dedicated national education sessions and online peer-support services could be offered to patients and families. There was support to investigate the use of patient navigators in youth to adult rheumatology care transitions, as has been tested in youth with hemoglobinopathies (22) and type 1 diabetes(23).…”

Patterns and patient factors associated with loss to follow-up in the Muhimbili sickle cell cohort, Tanzania

“…Our study shows that patients in the age range of 5-17 years were more likely to be LTFU than those 18 and over. Reasons can include fear of leaving familiar pediatric clinics and inadequate preparation for adult care [22,23]. In countries such as Tanzania, many children move to boarding schools at the age of 13, which may result in clinic appointments being missed and there are no strategies to handle the transition from pediatric to adult care.…”

Adherence to Medication During Transition to Adult Services

“…Self-reported adherence was significantly maintained or improved for patients in the intervention group compared with the control group. The transfer clinic also had a significant independent effect on adherence [49]. It appears that the role of a transition coordinator is an especially promising lower-scale intervention for improving adherence rates.…”

“…Recent interventions, such as those just described, have included the role of a transition coordinator/navigator [48,49]. The transition coordinator role is often performed by a mental health professional or healthcare worker who works with patients throughout the end of their pediatric care and through their transfer to adult services.…”

“…A second study [49] further supported the use of a care coordinator who is familiar with the psychosocial and medical needs of patients during the transfer to adult care. This study assessed the effects of the use of a care coordinator and transfer clinic on transfer outcomes in patients with hemoglobinopathies.…”