OBJECTIVES : To estimate the travel-related burden associated with treatment for spinal muscular atrophy (SMA) patients in the US. Due to the complex needs of SMA patients, only a select number of medical facilities can provide comprehensive SMA care in the US. It is important to understand the travel burden on SMA patients and their caregivers.

METHODS : Truven MarketScan^® Commercial and Medicare Supplemental Databases (January 2012–November 2017) were retrospectively analyzed to identify SMA patients, using ≥2 diagnosis codes (ICD-9: 335.0, 335.1x; ICD-10: G12.0, G12.1, G12.8, G12.9), >30 days apart. Travel burden for each patient was estimated using an algorithm that employed Monte Carlo sampling, drawing a probabilistic sample weighted on US Census data to provide a distribution of estimated distances, reported as median round-trip travel distance from residential census blocks to nearest SMA treatment center. The proportion of patients with high travel burden (≥30 miles per round-trip) and approximated travel costs (2017 US dollars) based on standardized travel reimbursement metrics were reported.

RESULTS : A total of 1,476 SMA patients were included. The estimated median (IQR) travel distance to SMA treatment centers was 54.1 (25.5-152.1) miles. Rural patients had longer median travel distance than patients living in urban areas (202.1 vs. 44.5 miles). Majority of patients (70.1%) had high travel burden to their nearest SMA care center. High travel burden affected almost all (99.5%) patients living in rural areas, compared to 65.9% of those in urban areas. Estimated mean (SD) travel cost per round-trip was $19.10 ($23.46) by automobile, increasing to $312.92 ($577.97) when flight and hotel accommodations were considered for long distances.

CONCLUSIONS : Travel requirements imposed by existing chronic therapies may place a high burden on SMA patients and their caregivers, especially those residing in rural areas. This burden could be decreased by therapies that do not require chronic administration at SMA care centers.