Filling the gaps in knowledge translation: Physical therapy recommendations for individuals with spinal muscular atrophy compared to standard of care guidelines

This study describes the current landscape of physical therapy practice recommendations in the United States for children with spinal muscular atrophy (SMA) and their relationship to current SMA standard of care (SMA-SOC) guidelines. Pediatric physical therapists were surveyed to determine their knowledge of SMA-SOC guidelines, and the type, duration and frequency of intervention they recommend for children with SMA, as well as perceived barriers and facilitators to progress in physical therapy. Physical therapists recommend five key intervention areas for individuals with SMA; however discrepancies exist between the SOC recommended intervention parameters and respondents’ reported frequency and duration of recommendations. After individuals with SMA initiated disease modifying pharmacotherapies, a majority of physical therapist respondents recommended increases in both frequency and duration of interventions. Nearly all respondents reported that familiarity with SOC guidelines was beneficial to their practice. The primary facilitator to progress was parent/caregiver support, while the primary barrier was limited access to resources. Variation in practice exists regarding care for those with SMA, particularly in the areas of frequency and duration of specific interventions. These findings can guide educational initiatives, identify future research needs and further inform SMA-SOC and best-practice rehabilitation management.