Accommodating the functional impairments associated with Duchenne muscular dystrophy (DMD) can involve substantial costs for households, according to a recently published study in the Orphanet Journal of Rare Diseases.
As patients’ needs increase, so do household costs. “Costs were particularly high in households caring for individuals with more advanced disease and limited ambulatory function,” the study’s authors noted.
As DMD is primarily a pediatric disease, the majority of patients live with their parents, who are responsible for many non-reimbursable medical costs such as supportive therapy, mobility aids and accessible home and vehicle modifications.
To understand and quantify the household costs associated with DMD, the authors conducted an online survey among U.S.-based family caregivers providing informal care to patients with DMD. The authors obtained responses from 90 caregivers.
The average household cost over five years among respondents was $75,000. The highest expenses were associated with acquiring or modifying automobiles and homes to adapt them to the needs of those with DMD. Other noteworthy costs included acquiring power wheelchairs, non-reimbursed consultations and drug costs.
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Households paid for around 75% of DMD-related home and vehicle costs out of pocket. The U.S. government, charitable foundations and raised funds accounted for the remaining 25%.
The researchers observed significant variability in household expenses from year to year and from family to family, as the costs followed the changing needs of each individual patient. For example, caregivers of patients with only moderate upper limb impairment had fewer expenses than caregivers of patients with more advanced disease.
“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.
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