French Survey Assesses Non-Reimbursed and Indirect Costs of Duchenne Muscular Dystrophy

Non-reimbursed resource consumption for male patients with Duchenne muscular dystrophy in France averaged €104,144 per patient each year, according to a survey of 25 families representing 26 patients published in Cost Effectiveness and Resource Allocation. The investigation documented expenses across direct medical care, direct non-medical resources, medical-social care, informal caregiving, and indirect costs that are not eligible for reimbursement.

Duchenne muscular dystrophy is a severe X-linked neuromuscular disorder characterized by progressive muscular atrophy, with an estimated 150 to 200 potential new cases occurring annually in France. Because little economic data had previously been available concerning the disease in the country, the study authors conducted a baseline assessment in anticipation of emerging treatments whose clinical effects will alter disease-related expenditures.

To evaluate these expenses, researchers identified patients with a confirmed diagnosis alongside their caregivers through the National Rare Disease Data Bank, enrolling voluntary participants. The researchers administered ad-hoc questionnaires to capture resource consumption. The authors noted that this voluntary recruitment strategy precluded any claim of national representativeness regarding resource use among families affected by the condition.

Direct costs represented €67,177 per patient per year of the total non-reimbursed resources. Within direct costs, informal care provided by families accounted for €43,090 per patient per year. Family members contributed an average of 66 hours per week to informal caregiving activities.

Indirect costs resulting from productivity loss reached €75,683 per patient annually, while families incurred an average out-of-pocket expense of €5,302 per year. Financial assistance received for the disease and associated disability averaged €14,980 per patient per year, with monthly allowances reaching up to €14,237 per patient annually. The authors concluded that the survey provides an initial inventory demonstrating the substantial financial expenditures and extensive time commitment borne by patients and caregivers.

The research was formally cataloged under clinical trial registration NCT06861270, which recorded an initial public release date of September 25, 2024.

Subject of Research: Non-reimbursed and indirect costs of Duchenne muscular dystrophy in France

Article Title: Costs estimation of male patients with Duchenne muscular dystrophy in France: survey on medical costs non reimbursed, non-medical costs, and indirect costs

Article References: Le Jeannic, A., Huot, L., Nze-Ossima, A., Gitiaux, C., Laugel, V., Péréon, Y., Salort-Campana, E., Attarian, S., & Durand-Zaleski, I. (2026). Costs estimation of male patients with Duchenne muscular dystrophy in France: survey on medical costs non reimbursed, non-medical costs, and indirect costs. Cost Effectiveness and Resource Allocation. https://doi.org/10.1186/s12962-026-00834-w

Image Credits: AI Generated

DOI: 10.1186/s12962-026-00834-w

Keywords: Duchenne muscular dystrophy, neuromuscular disorders, healthcare costs, informal care, productivity loss, rare diseases, caregiver burden, health economics, Costs, estimation, male, patients