DMD Care Transition in Turkey: Physician and Family Perspectives from a National Multicentre Survey

Duchenne muscular dystrophy (DMD) requires lifelong multidisciplinary care. With improved survival into adulthood, structured transition from pediatric to adult neurology has become essential yet remains poorly characterised outside Western European and North American settings. This study describes current transition practices, barriers, and recommendations from physician and patient perspectives in Turkey. A cross-sectional, multicentre study used two parallel online surveys:(i) child and adult neurologists from neuromuscular reference centres, (ii) individuals with DMD and their caregivers. Physician responses addressed transition practices, barriers, and recommendations. Patient/caregiver responses covered transition experience, care coordination, and comparative perceptions. The study was framed around the Got Transition Six Core Elements. Sixty-two physicians (43 child, 19 adult neurologists) from 28 of 81 provinces responded. Two-thirds (66.1%) reported no systematic transition programme. Transition typically commenced at age 18 (61.3%), despite 37.7% considering earlier initiation ideal. No centre used a standardised readiness assessment tool. Leading barriers were absence of a local programme (74.2%), parental preference to remain in pediatric care (69.4%), and lack of adapted adult environments (67.7%). Among 48 patients/caregivers (median age 20; 60.4% in adult neurology), only 13.8% reported a structured transition; 41.4% had no medical information transferred; 55.2% of transitions were family-coordinated. The majority (62.1%) rated pediatric follow-up more favourably, and 75.9% relied on patient associations as their primary information source. DMD transition in Turkey is largely unstructured, with significant information loss and family-driven coordination. Both physicians (87.1%) and patients (96.6%) strongly endorsed formalised protocols, joint clinics, and dedicated young adult services, providing an evidence base for national transition guidelines.

Key messages

• This first national DMD transition survey reveals shared recognition among physicians and families of the need for structured transition pathways in Turkey.

• Strong consensus on joint clinics, formalized protocols, and young adult services offers a clear roadmap for collaborative national guideline development.