335P Transition in Duchenne muscular dystrophy: understanding healthcare providers’ roles in an international context

Duchenne muscular dystrophy (DMD) is a rare X-linked disorder characterized by progressive muscle degeneration. The period of transition from pediatric to adult care is particularly challenging for adolescents with DMD, with the disease progressing at a time when youth typically strive for greater independence. With life expectancies increasing over the last years, health care providers are in need for better concepts to meet patients’ and families’ needs when going through this challenging period. Within the context of the GrowDMD study (http://www.growdmd.org), we aim to explore which measures and strategies are currently implemented in Canada, Germany and Italy to support and facilitate the transition of care for adolescents with DMD. We conduct semi-structured interviews with healthcare providers involved in the transition process, the total number being n=30 (10/country). In follow-up interviews healthcare providers are presented with two case vignettes that have been developed in collaboration with adolescents with DMD and their caregivers. Qualitative data are categorized across three countries and four languages. Data collection is ongoing, with the analysis of the first interviews having started. Preliminary results point toward the importance of roles (of patients, caregivers and healthcare providers), the existence and lack of support for these groups and several specific enablers and barriers for the transition process. Transitioning from pediatric to adult care is a challenge for patients and caregivers around the world. Findings from this international study will help to inform healthcare providers on how to navigate this process, delivering support for patients and families where needed and better understanding of their own role.