DMD Adult Care Transitions: Coordinating Specialists and Avoiding Care Gaps

Dr. Brandsema asks how centers can ensure that the multiple specialty transitions required in DMD happen in parallel rather than in a disjointed, piecemeal fashion. Dr. Veerapandiyan describes his center's structured approach. Each pediatric specialist — cardiologist, pulmonologist, neuromuscular neurologist — identifies a trusted adult counterpart, and transition and clinic coordinators work together to schedule at least two appointments with each adult provider before full transfer is complete. Importantly, the pediatric team continues to see the patient in between those adult appointments, maintaining continuity and oversight throughout the process. Each pediatric provider also maintains a direct communication channel with their adult counterpart, both for clinical handover and to ensure that complex, high-cost therapies such as exon skipping agents can be seamlessly continued on the adult side. Empowering adult colleagues with the knowledge and infrastructure to sustain these treatments is considered an essential component of a successful transition.

Dr. Brandsema raises the significant challenge posed by hard age cutoffs — particularly the strict policies at standalone children's hospitals that prevent scheduling appointments or accepting admissions beyond age 18 or 21. He notes that this arbitrary boundary can coincide with a period of meaningful disease change, such as a first cardiac event or major respiratory crisis, when the continuity of long-standing provider relationships matters most. Disjointed transitions create dangerous ambiguity: if a patient becomes short of breath, it may be unclear whether they should present to a pediatric emergency room or an adult one, depending on which specialty has already transitioned. Such fragmentation can lead to missed handovers and compromised outcomes.

Both panelists agree that transition timing should be guided by where the patient is in their disease course, not solely by age, and that advocating for flexibility around strict cutoffs — whenever possible — benefits patients, families, and providers alike.

In the last episode, "DMD Quality of Life: Overlooked Needs, Care Misconceptions, and Life Cycle Planning," the panel reflects on what is most commonly overlooked in DMD care and how families can be better supported across the full disease lifespan.