Neuromuscular Care Takes a Village: Multidisciplinary Approaches Can Optimize Treatment of Adults with Neuromuscular Disorders

As individuals with neuromuscular disorders (NMDs) navigate an increasingly complex clinical reality that has been reshaped by genetic testing and novel therapies, many can benefit from a multidisciplinary approach to neuromuscular care. This approach, which has been successfully implemented at the Vanderbilt University Neuromuscular Disorders Clinic, in Nashville, Tennessee, can facilitate access to care for patients by meeting all their health care needs in one place. Moreover, enlisting the specialists who are best equipped to treat patients with specific disorders increases quality of care, which leads to fewer hospitalizations and prolonged survival. The collaborative approach also benefits health care providers and can decrease physician burnout, said Amanda Peltier, MD, Professor of Neurology and director of the Muscular Dystrophy Association (MDA)/Amyotrophic Lateral Sclerosis (ALS) Clinic at the Vanderbilt University Medical Center (VUMC).

“The literature on ALS shows improved care and better survival with a multidisciplinary approach,” Peltier said during a session at the 2024 MDA Clinical and Scientific Conference in Orlando, Florida. “Patients have fewer hospitalizations and more independence, they know more about their disorder, and are more satisfied with their care. Having all those patients in one center also makes it easier for us to do research. That indirectly benefits the patients because then we have more data that we can use to treat their diseases.”

Interdisciplinary or transdisciplinary models of care are ideal because they involve comprehensive, coordinated treatment plans, as well as individual evaluations that occur in a shared clinical space, Peltier added. Co-treatment and shared appointments are encouraged in the transdisciplinary model.

While many individuals with NMDs may benefit from multidisciplinary care, implementing this model in practice is not without its trials. Distance to multidisciplinary clinics in rural areas is a major barrier, the speaker noted. The use of telemedicine, which proliferated during the COVID-19 pandemic, should be considered as a permanent tool.

Other obstacles include lack of insurance reimbursement for allied health care professionals, such as physical or speech therapists, longer appointment times, lack of effective communication between team members about scheduled appointments, and functioning in a limited space that must accommodate many different specialists and patients with disabilities.  

An NMD care team relies on collaboration between many essential members. “Identifying all those people on the team that are best suited, interested, and available is important but sometimes can be a challenge,” Peltier said. “Pulmonology and respiratory therapy are key in a neuromuscular multidisciplinary clinic due to the frequent neuromuscular diaphragm impairment. Identifying pulmonologists with an interest in NMDs and assistance with pulmonary management is vital. Respiratory therapist presence to perform spirometry is crucial for monitoring pulmonary involvement in multiple NMDs.”

Palliative care is another important component of multidisciplinary care due to the progressive nature of NMDs. Social workers can help identify care agencies and resources and assist patients with disability applications and insurance. Genetic counselors may also play a critical part as genetic testing and therapies become increasingly available.

Physical, occupational, and speech therapy help improve mobility, independence, activities of daily living, and speech augmentation. Certain patients may benefit from screening for dysphagia and may need help using assisted technology.

Nutrition is a key component of ALS clinics, but may be helpful to individuals with other NMDs, such as spinal muscular atrophy. “We know that patients with ALS who lose weight have higher mortality rates,” Peltier said. “Our nutritionist helps coordinate refeeding issues for patients who have lost a lot of weight, and helps with selecting tube feeding formulas for patients with a percutaneous endoscopic gastrostomy.”

The MDA/ALS Clinic at the VUMC has undergone many transformations since its opening in 1974, adding various specialists over time, including pulmonologists, physical therapists, social workers, and a palliative care unit. Moving forward, “our goal would be to create a center for basic, translational, and clinic research so that VUMC can use its strengths in genetic, imaging, and pharmaceutical research to develop meaningful treatments for these patients,” the speaker concluded.