Researchers highlighted the role of rehabilitation techniques and the importance of physiatrists to improve function and quality of life.
New therapies and improvements for Duchenne patients have resulted in a longer life span. Many patients now live well into their 30s and 40s.
The transition into adulthood poses new challenges. In an attempt to address the evolving needs of DMD patients, the CDC supported a revision of the 2010 guidelines for Duchenne care, called DMD Care Considerations.
The DMD Care Considerations Working Group, an expert panel composed of physiatrists and rehabilitation specialists, developed the updated guidelines after reviewing data from natural history, cohort studies, and non-randomized clinical trials.
The most fundamental change is how to care for people with DMD since they’re living longer.
“While in the past the main goal of DMD care was prolongation of survival, the focus has changed to optimization of quality of life, function, independence, and transition to adulthood,” researchers wrote.
In this respect, DMD patients are facing new challenges related to education, employment, personal relationships, psychosocial issues, and intimacy.
The new guidelines emphasize the neuromuscular specialist as the lead physician taking the main responsibility for the care of people with Duchenne, with the help of a diverse team of healthcare professionals.
The guidelines continue to highlight the importance of rehabilitation for Duchenne patients with the goal of improving overall muscle function, independence, and quality of life.
“Recommendations include daily preventive home stretching programs and selected orthotic interventions, splinting, casting, positioning and equipment. Submaximal aerobic activity (e.g., swimming and cycling) and avoidance of eccentric and high-resistance exercise are also recommended,” researchers wrote.
Researchers also highlight the role of physiatrists with training in neuromuscular medicine as potential leaders in a DMD multidisciplinary clinic.
“Regardless, the importance of lifelong rehabilitation cannot be emphasized enough as it is paramount in assisting people with DMD reach their full potential,” researchers wrote.