Perspectives From Before and After the Pediatric to Adult Care Transition: A Mixed-Methods Study in Type 1 Diabetes

Abstract

OBJECTIVE Among the many milestones of adolescence and young adulthood, transferring from pediatric to adult care is a significant transition for those with type 1 diabetes. The aim of this study was to understand the concerns, expectations, preferences, and experiences of pretransition adolescents and parents and posttransition young adults. RESEARCH DESIGN AND METHODS Participants completed questionnaires and responded to open-ended qualitative questions regarding self-management, self-efficacy, and their expectations and experiences with pediatric and adult care providers across the transition process. RESULTS At a mean age of 16.1 years, most pretransition adolescents had not yet discussed transferring care with their parents or doctors. Although many posttransition young adults reported positive, supportive interactions, several described challenges locating or establishing a relationship with an adult diabetes care provider. Qualitative themes emerged related to the anticipated timing of transfer, early preparation for transition, the desire for developmentally appropriate interactions with providers, the maintenance of family and social support, and strategies for coordinating care between pediatric and adult care providers. CONCLUSIONS Standardizing transition preparation programs in pediatric care and introducing transition-oriented clinics for late adolescents and young adults prior to adult care may help address patients’ preferences and common transfer-related challenges.