The Impact of Duchenne Muscular Dystrophy on Caregiver Employment: A Survey in Europe, Japan, and the United States

Speaker(s)

Strober J1, Ishigaki K2, Merla V3, Posner N3, Cappelleri J3, Xiao S3, Talaga AK3, Brunner S3, Morton E4, Olsen S5, de Courcy J4
1UCSF Benioff Children's Hospital, San Francisco, CA, USA, 2Tokyo Women's Medical University, Shinjuku City, Tokyo, Japan, 3Pfizer Inc., New York, NY, USA, 4Adelphi Real World, Bollington, UK, 5Adelphi Real World, Macclesfield, CHE, UK

Presentation Documents

OBJECTIVES: Duchenne muscular dystrophy (DMD) is a genetic disorder associated with progressive muscle degeneration due to a lack of dystrophin. People with DMD often require extensive care, impacting caregiver employment. Here we describe DMD caregiver employment.

METHODS: The Adelphi DMD Disease Specific ProgrammeTM was a cross sectional survey of DMD caregivers in France, Germany, Spain, Japan, and the US, running from October 2022 to May 2023 when an interim dataset was created. Caregivers completed online or paper records collecting caregiver and patient demographics, employment data, and work productivity and activity impairment (WPAI) data for those employed. Descriptive analysis was performed.

RESULTS: 77 DMD caregivers were enrolled, with a mean (SD) age of 48.5 (9.1) years. 81% were women and 94% were a parent of the patient. 43% were employed, 21% full time. Patients had a mean age 18.0 (6.3) years; 58% were ambulatory. Caregivers spent a mean of 43.4 (32.2) hours a week providing care. 97% of patients had additional caregivers, including the patient’s other parent (76%) and/or a professional caregiver (37%). Overall, 35% of caregivers made changes to their work due to caring. The 29% of caregivers who work took a mean 2.3 (1.7) days off work in the last three months to care for a patient. Caregiver-reported WPAI indicated that due to the patient’s DMD, caregivers missed a mean of 6.5 (8.2) hours from work over the previous 7 days. Mean percentage impairment while working was 38.8% (21.7). Overall work impairment was 44.1% (21.2); impairment to regular activities was 54.1% (26.5).

CONCLUSIONS: The majority of DMD caregivers do not work. Those that are employed had to take time off and experienced impairments while working because of caring for the patient. Patients required multiple caregivers, including professional care. The results highlight the burden on DMD caregivers’ ability to work.

Code

PCR141

Topic

Economic Evaluation, Patient-Centered Research, Study Approaches

Topic Subcategory

Patient-reported Outcomes & Quality of Life Outcomes, Surveys & Expert Panels, Work & Home Productivity - Indirect Costs

Disease

Neurological Disorders, Rare & Orphan Diseases