379P A qualitative study on people with Duchenne muscular dystrophy and caregivers’ experiences during the transition process from pediatric to adult healthcare

Transition from pediatric to adult-centered healthcare involves both medical and psychological needs of adolescents and young adults. This process can be especially complex in rare neurological diseases, including neuromuscular disorders. Duchenne Muscular Dystrophy (DMD) is a rare X-linked disorder characterized by progressive muscle degeneration, causing the loss of independent ambulation and severe multisystem complications. Over the past few years, the survival perspectives for people with DMD have improved, leading to the need for a transition process from pediatric to adult healthcare. The present study aims to explore the experiences of adolescents and young adults with DMD and their families in three countries, identifying the challenges and supportive factors encountered during the transition process. This will help to understand how to improve health care, including rehabilitation systems, for individuals with DMD and other rare diseases. People with DMD aged 15-25 years and their caregivers undergo semi-structured interviews on their transition experiences and daily life challenges and facilitators. This study is included in the project “Growing into Adulthood with DMD - Comparing Patient Experiences and Systems to Optimize Care”, funded by the European Joint Programme on Rare Diseases 2020 (N°825575), and involved German, Italian, and Canadian research centers. Data collection and qualitative synthesis of data from interviews are ongoing. The themes that emerge most from interviews include the need for transition policies, help from public institutions and the lack of information on transition for patients and caregivers. Without structured guidelines, young people and their families feel left alone during this process. The experiences of people with DMD and families across various countries will inform recommendations to improve the knowledge and development of transition programs from pediatric to adult care systems.