Physical Therapy Is Underutilized in Children and Adults with Spinal Muscular Atrophy

Individuals with spinal muscular atrophy (SMA) benefit from an approach to care that addresses not only their symptoms but also the various functional limitations associated with the loss of motor neurons. Although providers of physical therapy (PT) are important members of the clinical team, they continue to play a limited role in the routine care plans of patients with SMA. An analysis of administrative claims filed between January 2016 and September 2022 for U.S.-based patients with SMA showed that many individuals with SMA, especially those who never received disease-modifying therapies (DMTs), do not engage in routine PT.

The retrospective analysis, presented at the 2024 MDA Clinical and Scientific Conference in Orlando, Florida, included 1187 patients who received at least one DMT for SMA and nearly 3,000 untreated individuals living with the disease. Most participants were adults who lived in the southern region of the United States and used Managed Medicaid as their health insurance plan. The researchers looked at trends in the utilization of physical, occupational, and speech therapy during the 1-year follow-up.

More treated patients reported at least one visit to a physical, occupational, or speech therapist than those who never received a DMT. The authors noted that the reasons for disparities in therapy utilization between treated and untreated patients may include proximity to multidisciplinary care centers and disease severity. The rates of PT utilization were the lowest for adults with SMA. Nearly 80% of the school-aged patients with SMA in the database engaged in PT, while less than half of their untreated counterparts received PT services.

The authors noted that adult PT clinics often do not have the resources to accommodate patients with SMA. Other common barriers include unmet equipment needs, lack of expertise in managing SMA-related disability, and therapists’ reluctance to work with adults with SMA. Moreover, physiotherapists may need referrals to assist patients with SMA due to the pre-approval requirements of many payers.

“Some patients start to see the value for improvement with PT in conjunction with medication,” the authors said. “For adult patients who have lived most of their lives without treatment, it is still worthwhile for them to consider the impact PT can have in their lives.”

Efforts to incorporate PT should be considered as it is a critical complement to medical treatment.

For children with SMA, school-based physical therapy may fill in this clinical gap, Jessica Herron, PT, a pediatric physical therapist at Le Bonheur Children’s Hospital in Memphis, Tennessee, explained in a session at the 2024 MDA meeting. Unlike the medical model of PT, the school-based model enables therapists to provide services in children’s natural environment, integrating them with their daily school activities. Herron said the goal is to “keep the client and the family at the center, empowering them, teaching them how to advocate for themselves, how to ask questions, and making sure that they understand what is going on from your perspective so that they can relay that to other health care providers [with whom] they interact.”