Accommodations as DMD Progresses Incur Substantial Household Costs

Accommodations for progressive functional impairment due to Duchenne muscular dystrophy (DMD) incur substantial costs for households in the US, according to a survey of US-based family-member caregivers of individuals with DMD.1 The findings were published in the Orphanet Journal of Rare Diseases.

While accommodations can improve quality of life for patients with DMD and foster independence, the costs of home and ve modifications fall mostly on the families of patients. | Image credit: Nadzeya - stock.adobe.com

DMD, an inherited neuromuscular disorder, is characterized by progressive muscle loss and motor function decline beginning in childhood, which leads to loss of ambulation, upper-limb impairment, respiratory function decline, and premature mortality.2 While incurable, current treatment options can extend survival and improve quality of life for patients.1 The pediatric nature of the disease means most people with DMD live at home, and families are typically responsible for any medical costs not covered by insurance and for extensive unpaid caregiving.

“Families also incur extensive non-medical costs to accommodate DMD-related functional impairments,” the authors wrote. “For example, they may need to modify their homes by widening doorways, modifying bathrooms, or installing an elevator, and some may consider moving into new, more accessible homes. Similarly, they may need to install powered ramps or wheelchair lifts in their cars or purchase handicap-accessible vans.”

While such accommodations can improve quality of life and help patients with DMD maintain more independence, the costs of these modifications fall mostly on the families of patients. In turn, the assessments of the overall financial impacts of DMD should include detailed research on the costs to families, the study authors explained.

The new, cross-sectional study aimed to produce detailed estimates of the costs associated with accommodating DMD progression in households in the US via a retrospective online survey. Deidentified responses from US-based family-member caregivers of individuals with DMD were synthesized to estimate the household-level costs.

A total of 90 caregivers from distinct households representing 106 patients with DMD responded to the survey. The mean (SD) patient age was 14.5 (5.3) years, and the mean time since diagnosis was 10.4 (5.4) years. The mean caregiver age was 45.6 (8.4) years.

The majority of individuals with DMD were covered by employer-sponsored health insurance (67.9%) and/or state health insurance (58.5%), and nearly all had medical and pharmacy coverage in the 12 months prior to the survey. Regarding ambulation status, most patients were nonambulatory (59.4%), while 23.6% were ambulatory and 17% were transitional. Additionally, 37.7% had no upper-limb impairment, 36.8% had mild impairment, and 25.5% had moderate to severe impairment.

Per the study’s inclusion criteria, all households surveyed reported incurring at least 1 expense related to home or vehicle purchases or modification within the past 5 years. Most commonly, costs were related to purchasing and/or modifying a handicap-accessible vehicle, modifying home entrances, modifying bathrooms, and modifying interior home doorways. Over 5 years, the average household expenses were $78,303 on home and vehicle purchases or modifications. The mean cost of modifying home entrances alone was reportedly $10,236. Costs also commonly prohibited families from making home- or vehicle-related modifications.

Most respondents also reported at least 1 medical equipment purchase that was not covered by insurance within the last 5 years, with the most purchased items being powered wheelchairs, foldable/travel wheelchairs, walkers or leg braces, manual wheelchairs, and cough assist machines. More than half (54%) of households reported payments for health care visits or prescription drugs in the past 3 months that were not reimbursed. Additionally, 22% reported costs related to payment for supportive therapy, and 16% reported payments for in-home professional caregiving. Medical equipment purchases cost an average of $14,071 over 5 years, according to the survey, and households paid a total of $13,642 each year out of pocket for nonreimbursed health services or drugs.

The study was limited by its design as a cross-sectional, single-cohort survey, and the findings are associational rather than causal, the authors noted. It also utilized retrospective, self-reported data, introducing the potential for recall bias. The study population was also composed mostly of individuals with higher socioeconomic status, which limits the generalizability of the findings.

“Families with individuals with DMD face a range of financial challenges and substantial household costs as they seek to provide the necessary support and accommodations for their loved ones,” the authors concluded. “Costs were particularly high in households caring for individuals with more advanced disease and limited ambulatory function. This research provides additional detail on both infrequent and recurring costs for these households, as well as the rate that such expenses are forgone due to affordability barriers.”

References

1. Innis B, Jarvis J, Renteria T, Audhya I. Household costs in the United States for accommodating functional impairments associated with Duchenne muscular dystrophy: results from a caregiver survey. Orphanet J Rare Dis. Published online June 12, 2025. doi:10.1186/s13023-025-03794-1

2. Duchenne muscular dystrophy (DMD). Cleveland Clinic. Updated June 27, 2025. Accessed July 9, 2025. https://my.clevelandclinic.org/health/diseases/23538-duchenne-muscular-dystrophy-dmd