OBJECTIVES: The costs households face to accommodate functional impairments for individuals with Duchenne muscular dystrophy, a progressive, X-linked neuromuscular disease, have not been well characterized. This study quantified Duchenne-related costs paid by households for home, vehicle, and medical equipment expenditures.

METHODS: Caregivers completed an online survey which gathered information on home, vehicle, and medical equipment expenditures to accommodate functional impairments for individuals with Duchenne. To participate, caregivers had to have provided care to at least one household member with Duchenne for >12 months. Information on Duchenne-related costs for home, vehicle, and medical equipment expenditures was gathered for the past 5 years.

RESULTS: Across 90 surveyed caregivers, 74 (82%) provided care for one individual with Duchenne and 16 (18%) provided care for ≥2; 98% identified as a primary or co-primary caregiver. Mean age for the 106 individuals with Duchenne was 14 years (range: 2 to 35 years), 59% always used a wheelchair or scooter, and 58% lived in a town or suburban area (vs rural or urban area). Average household costs totaled $78,303 for Duchenne-related home and vehicle expenses (SD: $78,411). An additional $14,071 was spent on medical equipment purchases (SD: $27,427). The most frequent Duchenne-related home and vehicle expenses were purchasing or modifying a handicap-accessible vehicle (64%; average cost: $47,997, SD: $29,765), modifying home entrances (61%; average cost: $16,750, SD: $29,081), and modifying bathrooms (46%; average cost: $13,512, SD: $15,722). Costs were higher among households with at least one Duchenne individual relying on a wheelchair or scooter daily.

CONCLUSIONS: Households caring for individuals with Duchenne face a significant financial burden as a result of high out-of-pocket costs, as well as financial barriers in making accommodations due to the progressive nature of Duchenne.