Abstract
<title>Abstract</title> <p> <bold>Background</bold> Duchenne Muscular Dystrophy (DMD) is a rare neuromuscular disease characterized by progressive muscle degeneration leading to severe disability. Therapeutic advances in recent years have significantly increased life expectancy, making it necessary to update clinical management strategies. Consequently, the transition from pediatric to adult care has become a crucial challenge, as DMD care was traditionally centered within pediatric services. <bold>Mehtods</bold> This qualitative study, part of the GrowDMD project (“Growing into Adulthood with DMD - Comparing Patient Experiences and Systems to Optimize Care”), explored the experiences of transition of care among youths with DMD and their caregivers in Italy, Germany, and Canada. Between 2022 and 2023, semi-structured interviews were conducted. The data were analyzed using thematic analysis with NVivo, allowing the identification of common and country-specific topics, as well as differences between youths’ and caregivers’ perspectives. <bold>Results</bold> The study included 18 youths with DMD aged 15-25 years and 26 caregivers. Participants consistently reported gaps between pediatric and adult services, fragmentation of adult care, and insufficient information about the transition process that often resulted in emotional distress and relational difficulties for both youths and their caregivers. <bold>Conclusions</bold> Overall, the transition to adult care is a complex, multifaceted process requiring a biopsychosocial approach. Structured, coordinated, and multidisciplinary transition pathways are needed, including psychological support and strategies that progressively balance youths’ desire for autonomy with their increasing need for assistance. Such pathways are essential to ensure continuity of care and to inform the development of international guidelines adaptable across healthcare systems and applicable to other rare chronic conditions. </p>