DALLAS—The transition from pediatric to adult care of patients with a neuromuscular disease requires early planning and a multidisciplinary approach for optimal outcomes, as discussed in a session at the 2025 Muscular Dystrophy Association (MDA) Clinical & Scientific Conference.
Once individuals with a neuromuscular disease reach age 18, they are expected to transition from pediatric to adult-oriented healthcare. The recommended transition timeline is as follows:
- Age 12: introduce the transition plan to the family.
- Age 14: begin transition planning.
- Age 16: prepare the family for adult care and discuss the transition plan.
- Age 18: reinforce awareness of the transition plan.
- Age 18 to 22: transition to an adult model of care.
- Age 23 to 26: fully integrate into adult care.
A successful transition involves developing self-advocacy skills, accessing medical records, establishing care with adult providers, increasing independence in medical appointments, understanding healthcare benefits and pharmacy accessibility, and planning for advanced treatments or emergencies.
“Transition needs to be purposeful, planned, dynamic, multi-faceted, multi-stage, and [an] active process,” panelist Jodi Wolff, Ph.D., MSSW, of Parent Project Muscular Dystrophy said at the session.
The importance of a well-planned transition
Without a structured transition plan, young adults with neuromuscular diseases may face significant risks.
“When I was 22 years old, no [single] system oversaw my complete care . . . Some items may end up being overlapped because my care is now fragmented into different locations and times,” shared Tyus Hill, a Dallas man diagnosed with Duchenne muscular dystrophy (DMD) and a panelist at the session.
Additional risks of an unstructured transition include:
- Delayed entry into the adult medical system.
- Running out of or discontinuing medications due to lack of oversight.
- Missing appointments and gaps in care.
- Increased risk of secondary comorbidities due to medication inconsistencies.
- Greater reliance on urgent care due to a lack of a primary provider.
- Loss of medical records and critical health information.
Challenges in transitioning to adult care
Despite its importance, transitioning to adult care presents multiple challenges, including:
- A shortage of adult neuromuscular specialists familiar with these diseases.
- Changes in health insurance coverage, particularly for assistive technology.
- Significant behind-the-scenes coordination efforts.
- Limited access to multidisciplinary care in adult healthcare settings.
A major hurdle is the need for multiple specialists to manage complex symptoms. Bakri Elsheikh, MBBS, from the Ohio State University Wexner Medical Center, highlighted common issues in neuromuscular diseases. These include: immobility, respiratory complications, psychological concerns, orthopedic issues, pain, poor nutrition, cardiovascular complications, gastrointestinal problems, and skin integrity concerns. Each symptom may require a different specialist, resulting in a patient possibly managing appointments with at least nine different providers.
“For a DMD adult . . . it is difficult to have to leave the house on different days to see different doctors who are not in regular contact with one another,” Hill said. “Transitioning from pediatric care to adult care, I had to build relationships with new adult specialists, which wasn’t the easiest thing for me since I was no longer getting my healthcare from a location . . . I was familiar with.”
Additionally, geographic disparities may limit access to the necessary specialists and coordinated healthcare networks, further complicating the transition.
The role of multidisciplinary care in transitioning
Panelists agreed that expanding access to multidisciplinary clinics is essential for improving transition outcomes. These clinics streamline care by providing access to multiple specialists in one location, improving organization, accessibility, and overall patient experience.
“For adults with DMD — this is based on my experience and others with DMD — the biggest challenge we have with going from pediatric to adult care is missing out on all the benefits from multidisciplinary clinics where all our information is in the same place,” Hill noted.
Multidisciplinary care is supported by clinical guidelines for DMD, spinal muscular atrophy, and amyotrophic lateral sclerosis. MDA Care Center teams follow this model, offering comprehensive support in diagnosis, treatment options, and disease management. According to Elsheikh, there are currently 150 active MDA Care Center teams nationwide.
The key takeaway from the session was that although transitioning from pediatric to adult care is complex — particularly given the limited availability of adult multidisciplinary clinics — it remains a critical process that should begin as early as possible following diagnosis.
Looking ahead, the hope is for a more seamless and coordinated transition process. As Elsheikh emphasized, “We must advance, we must refine, and we must improve.”
