Duchenne Muscular Dystrophy (DMD) is a rare disease that affects males in their early childhood. Individuals with DMD are in constant need of assistance for their daily activities, which has significant consequences on caregivers’ physical and psychological health. In addition, caring for a child with DMD results in a tremendous financial burden.

OBJECTIVES: The objective of this study is to estimate the economic burden of Canadians caring for a child diagnosed with DMD using an auto-administered questionnaire.

METHODS: A 37-item electronic survey available on Microsoft Forms was created by Pfizer Canada ULC and disseminated by two Patient Advocacy Groups at the national and provincial (Quebec). In the survey, sociodemographic characteristics of caregivers of children with DMD, loss of productivity in employed caregivers and out-of-pocket expenses, regardless of employment status were described.

RESULTS: Twenty caregivers living in 5 different Canadian provinces participated in the survey. Ninety-five percent (n=19) of caregivers lived with at least one child with DMD. Participants cared for a total of 28 children with DMD. Half of the patients were in an ambulatory health state while the other half were non-ambulatory. Forty-five percent (n = 9) caregivers were employed. Employed caregivers did not report a significant shift in their working habits and absenteeism due to DMD. However, 35% (n=7) participants became unemployed following the DMD diagnosis. The median annual out-of-pocket costs related to DMD was $22,106.52 (11,267.77; 34,897.83) with 89% of these expenses that were due to car and home adaptions.

CONCLUSIONS: This study describes the societal impact of DMD in Canada and provides a unique perspective on the economic burden of Canadians caring for a child diagnosed with DMD.