Transition from pediatric to adult neurology care in Duchenne muscular dystrophy: a national survey of patient and physician experiences.

backgroundEffective transition from pediatric to adult care is essential in Duchenne muscular dystrophy (DMD), but evidence on how transition is delivered in everyday practice remains limited. In Turkey, no clinical framework specifies how transition should occur, although national regulation requires completion of transfer by age 23. This study aimed to describe current practice, identify barriers and facilitators from physician and patient perspectives, and compare findings with international frameworks to inform a national guideline.

methodsAs part of the AIM-DMD (National plan of action to raise Awareness and Improve Medical care of Duchenne Muscular Dystrophy) initiative, we conducted a national cross-sectional survey between June and December 2025, comprising parallel sub-studies of physicians and patients with DMD and their caregivers. Two structured online questionnaires were developed, guided by the Got Transition Six Core Elements framework and international Delphi consensus statements. The physician survey was distributed through professional networks; the patient and caregiver survey through the DMD Families Association and neuromuscular reference centers.

resultsSixty-two physicians (43 pediatric and 19 adult neurologists) from 28 cities and 48 patients and caregivers from 24 of these cities responded. Only 17.7% of physicians reported a systematic institutional transition program, 38.7% prepared individualized transition plans, and 9.7% described true readiness assessment. Joint pretransition consultations were held regularly by only 6.5% of physicians. Among transitioned patients, 72.4% first heard about transition at age 17 or later, and 62.1% considered their preparation inadequate. All physicians reported transferring medical data at transition, most commonly through institutional electronic health records (80.6%); however, 41.4% of patients and caregivers were unaware that any information had been conveyed to the adult team. Physicians, patients, and caregivers all identified the lack of a formal transition protocol, joint pediatric and adult consultations, multidisciplinary integration, and a designated coordinator role as priority areas for improvement.

conclusionsDMD transition care across Turkey lacks consistent structure. Key gaps include limited readiness assessment, delayed discussions, poor patient and caregiver awareness of the transition process, and lack of coordinated multidisciplinary structures. Our study identified common priorities raised by physicians, patients, and caregivers that need to be improved and could inform the development of standardized protocols.