Healthcare Resource Utilization (HCRU) by Patients With Duchenne Muscular Dystrophy (DMD) Using UK Patient Level Data

OBJECTIVES:

This study aimed to identify the HCRU and costs of patients with DMD by age range to determine the burden associated with the condition as it progresses.

METHODS:

Using five years of NHS Hospital Episode Statistics (HES) data, the ICD-10 code of G71.0 identified an initial cohort of patients likely to have DMD. The cohort was refined to exclude other forms of muscular dystrophy based on clinical expert input and the specific clinical characteristics of DMD, resulting in a final cohort of 1,937 individuals’ patient level data for analysis. This analysis evaluated HCRU in the acute setting and life expectancy for patients with DMD.

RESULTS:

The mean age of the 1,937-patient cohort was 17 years. The data were aligned to DMD disease progression, with abnormal ambulation developing in 6–15-year-olds and ventilation support needed for those aged 11-20 years. Over 50% (976) had significant mobility issues and over a third (650) required ventilation. Over 75% of healthcare activity was through outpatient appointments, with an average annual cost of £1,325 per person across all age groups. For patients below 20 years, the average annual cost for elective admissions was £1,538 per person, while for those over 20, it was £987 per person. Non-elective average annual admission costs were more than 2.5 times higher per person for individuals over 20 years (£1,692) compared to those under 20 years (£658). The mean age of death was 28 years.

CONCLUSIONS:

This latest HES study of DMD aligns with current literature on the reported costs of acute care settings, indicating that costs remain unchanged despite the availability of new treatments for DMD.