DMD Transition to Adult Care: Timing, Best Practices, and Patient Readiness

Dr. Brandsema opens this segment by contextualizing the growing need for adult DMD care. Standard of care optimization alone increased life expectancy by nearly 20 years between the 1980s and 2000s, and with newer therapies and earlier diagnosis through newborn screening, DMD is no longer a pediatric-exclusive disease. He has personally met patients with DMD in their 50s. This reality demands that adult-focused neuromuscular clinics develop genuine capacity to care for this population, whether through dedicated adult programs or lifespan clinics that follow patients from birth through older age.

On the question of when to begin transition discussions, Dr. Veerapandiyan pushes back on guideline recommendations of age 12 to 14, finding that age 15 to 16 is more realistic and meaningful in practice. He emphasizes that transition encompasses both medical and social dimensions — including developing independence, understanding sexual health, and navigating adulthood with a progressive disease. He involves palliative care in transition planning, taking care to reframe it for families as a support service across the lifespan rather than an end-of-life service. A dedicated transition coordinator also helps families understand what the process entails and how to move safely into an adult care setting.

Dr. Brandsema frames transition as a multi-year process rather than a single handoff event. Beginning in the early teens, he gradually shifts attention toward the patient as an individual — asking teenagers directly about their medications, doses, and schedules. A 17-year-old who cannot answer those questions represents a meaningful readiness gap. He also highlights a practical but telling example: one family's biggest barrier to transitioning was simply not knowing where to park their van at the adult clinic. Inviting adult specialists — cardiologists, pulmonologists — to meet families within the familiar pediatric setting before full transfer has proven an effective bridge strategy. Flexibility around scheduling, including seeing specialists on separate days rather than in a single marathon visit, is increasingly valued by adult patients.

In the next episode, "DMD Adult Care Transitions: Coordinating Specialists and Avoiding Care Gaps," the panel examines how to synchronize specialty transitions, prevent dangerous handover gaps, and ensure continuity of complex treatment regimens across care settings.