OBJECTIVES:

Duchenne muscular dystrophy (DMD) is a severe progressive neuromuscular disease. This study aimed to estimate the 5-year period prevalence of DMD from 2012-2017 in Alberta, Canada, as well as healthcare resource utilization (HRU) and medical costs of DMD in the first year post-DMD diagnosis.

METHODS:

This retrospective study linked provincial healthcare administrative data to identify patients with DMD utilizing a modified diagnostic code algorithm, which included additional restrictions to males <30 years of age and included only patients with a corticosteroid prescription. A five-year (April 2012 to March 2017) period prevalence estimate was calculated and all-cause direct HRU and costs were examined in the first-year post-diagnosis.

RESULTS:

Overall, 24 patients (median age: 12.68 years (IQR 5.37-16.83)) with DMD who had 1-year follow-up data were identified. The estimated five-year period prevalence was 8.57 (95% CI 6.71-10.80) per 100,000 males <30 year old. All-cause HRU in the first-year post-diagnosis included a mean (SD) of 0.88 (1.73) hospitalizations (number of days hospitalized: 16.88 days (49.19)), 6.04 (5.92) general practitioner visits, 57.88 (106.11) specialist visits, and 27.08 (18.70) ambulatory care visits. Mean (SD) all-cause direct costs were $27,969.77 ($36,183.26) CAD in the first-year post-diagnosis.

CONCLUSIONS:

Patients with DMD had multiple interactions with the healthcare system in the year following diagnosis, resulting in substantial direct medical costs. More effective treatment strategies are needed to improve health outcomes and reduce the burden of DMD.