A Nationwide Survey for Hip Surveillance and Treatment Pattern Differences for Children With Spinal Muscular Atrophy (SMA)

BACKGROUND: With advancements in disease-modifying therapies (DMTs) for spinal muscular atrophy (SMA), there is a need to reassess hip disease management. This study investigates current screening and treatment practices for hip disease in SMA patients across the United States, aiming to identify trends and areas for improvement. METHODS: A survey was distributed via REDCap to providers at 71 neuromuscular disease clinics nationwide, identified through the Muscular Dystrophy Association, CureSMA, and Rady Children's Alumni Network. The survey focused on hip disease screening and treatment practices in 3 SMA patient populations: ambulatory patients, those with potential for ambulation due to DMT, and nonambulatory patients. RESULTS: A total of 27 providers from 21 institutions met inclusion criteria. Respondents represented orthopaedics (n=12), neurology (n=7), rehabilitation medicine (n=6), pediatrics (n=1), and physical therapy (n=1). Surveillance practices varied by specialty: orthopaedic providers more commonly relied on physical exams or no formal monitoring. Across all ambulatory levels, nonoperative strategies were favored at lower migration percentages (MP 20 to 30), whereas operative interventions-primarily VDRO and acetabuloplasty-were more commonly selected at MP ≥40. Among orthopaedic surgeons, the likelihood of recommending VDRO with or without acetabuloplasty increased with MP, reaching 67% for ambulators and potential ambulators and 50% for nonambulators at MP 50. CONCLUSION: This national survey reveals substantial heterogeneity in hip surveillance and treatment practices for children with SMA, with differences by mobility status and provider specialty. In the context of evolving SMA phenotypes with disease-modifying therapies, strategies remain inconsistent, particularly between orthopaedic and nonorthopaedic providers. These findings highlight the need for further research and multidisciplinary collaboration to evaluate whether standardized protocols could enhance care consistency and improve outcomes in this population. LEVEL OF EVIDENCE: Level IV.