Thanks to better care, many people with Duchenne muscular dystrophy (DMD) are now living longer and reaching adulthood. But moving from child-centered healthcare to adult services isn’t always easy. A recent case report in the journal Healthcare highlights some of the challenges and the importance of planning ahead.
The report describes the experiences of a 17-year-old boy with DMD in Romania. He felt comfortable talking to his doctors and involved in making decisions about his health. However, the authors reported he felt unsure about managing some medical tasks on his own, mainly due to the mobility challenges he faced. He also had a hard time finding adult specialists for his condition.
This case shows how important it is to have a personalized “transition plan” that maps out how the medical and psychological needs of a person with DMD will be met in adulthood. Experts recommend starting to plan for the transition process early — ideally around age 14 — so there’s plenty of time to prepare.
But healthcare is just one part of the picture. As the authors explained, “transition plans should also address broader socio-economic factors, including financial support, housing adaptations, transportation solutions, and access to assistive technologies, all of which are critical to fostering patient independence.” They also suggested supporting “vocational planning, social integration, and educational opportunities tailored to the patient’s abilities” to help improve quality of life.
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The switch to adult care is smoother when doctors from both pediatric and adult teams work together. In this case, joint consultations between the pediatric and adult neurology teams helped ease the transition.
The authors also noted that adult specialists trained to manage DMD are still limited. More training programs and better collaboration with pediatric teams could help close that gap and ensure patients continue to receive the care and support they need when they reach adulthood.
Family involvement plays a key role too. Including caregivers in decision-making promotes autonomy and benefits both patients and their families.
The case report also highlighted the growing role of patient organizations in Romania. These groups are helping families navigate the system, secure equipment, and access emotional and practical support. “Their involvement ensures that patients’ voices are heard and fosters a patient-centered approach to care,” the authors said.
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