Household costs in the United States for accommodating functional impairments associated with Duchenne muscular dystrophy: results from a caregiver survey.

backgroundIndividuals with Duchenne muscular dystrophy (DMD) often require mobility aids and accessible homes and vehicles. Because these accommodations are not typically reimbursed by insurance, costs largely fall upon patients' families. Additionally, families often incur high out-of-pocket costs for DMD-related health services and treatments. Research describing these expenses is important to understand the full financial cost associated with DMD. The objective of this study was to quantify household costs associated with DMD-related accommodations.

methodsA cross-sectional, retrospective online survey was conducted among United States-based family caregivers who provided informal (unpaid) care to ≥ 1 household member with DMD for ≥ 12 months and paid for ≥ 1 home/vehicle-related expense in the past 5 years. Participants reported costs, external financial support, and affordability for (1) home/vehicle purchases/modifications, (2) non-reimbursed medical equipment, (3) non-reimbursed health services or drugs, and (4) other household expenses. Costs were averaged over all respondents and among those incurring costs (conditional means). Average costs were stratified by ambulatory status, upper-limb impairment, insurance coverage type, home ownership status, and annual combined household income.

resultsAmong 90 caregivers, 94.4% were female, 90.0% were White, and 82.1% were the primary caregiver. The mean (standard deviation [SD]) age of individuals with DMD (n = 106) was 14.5 (5.3) years. Over half (59.4%) were reported as non-ambulatory, 23.6% as ambulatory, and 17.0% as transitioning from ambulatory to non-ambulatory. Average (SD) household costs over the past 5 years were $78,303 ($78,411) for home/vehicle expenses and $14,071 ($27,427) for medical equipment. Major home/vehicle expenses included purchasing/modifying a handicap-accessible vehicle (64% in past 5 years; conditional mean 5-year cost: $47,997), modifying home entrances (61%; $16,750), and modifying bathrooms (46%; $13,512). Powered wheelchairs were the leading driver of medical equipment costs (43%; $15,718). Annual recurring, non-reimbursed health service and drug costs were $13,642 (SD $41,792). Other recurring annual household expenses were $2593 (SD $4144). Household costs generally increased with more advanced disease progression. Households were able to pay for some expenses using external funding from the US government (e.g., Medicaid waivers) and non-government resources (e.g., charitable foundations, independently raised funds). However, many caregivers reported having to forgo purchases due to prohibitive costs.

conclusionsHouseholds incur substantial costs to accommodate the functional impairments experienced by individuals with DMD.