OBJECTIVES: Duchenne muscular dystrophy, an X-linked neuromuscular disease, results in progressive muscle weakness, including loss of ambulation. Duchenne requires considerable indirect non-medical expenditures, particularly as the disease progresses across health states based on ambulatory status. Sources of financial support for Duchenne households have not been well described. This study sought to characterize financial benefits received by Duchenne households.

METHODS: Caregivers completed an online survey that gathered information on financial, social, and other aspects influenced by Duchenne. Caregivers were required to have provided care to a household member with Duchenne for >12 months and to have incurred a Duchenne-related expense within the past 5 years to accommodate disease progression. Potential sources of financial support to fund direct non-medical costs included 1) social program benefit payments; 2) compensation for caregiving; and 3) financial support for Duchenne-related home/vehicle, medical equipment, professional caregiving, and supportive therapy.

RESULTS: Caregivers (n=90) representing 106 individuals with Duchenne completed the survey. Benefit payments from social programs were received by 34% of households, primarily from Supplemental Security Income (68%), Social Security Disability Insurance (19%), and Social Security (10%), with an average total benefit of $8504 (SD: $6902) in the past year. Additionally, 26% of caregivers were compensated for caregiving, largely through Medicaid (48%) or In-Home Supportive Services (17%). Households with non-ambulatory individuals (n=60) were more likely to receive benefit payments (43%) or compensation for caregiving (32%) compared to households with individuals with greater ambulatory function (n=30; 17% and 13%, respectively). Across home and vehicle expenditures, households received an average of 24% of financial support from the US government, charitable foundations, community groups, family or friends, and independently raised funds.

CONCLUSIONS: Although the majority of direct non-medical costs are covered by households and most caregiving is informal, social resources play a crucial role in providing assistance to individuals with Duchenne and their families.