The Balancing Act of Paid Work and Caregiving in Duchenne Muscular Dystrophy (DMD): Results from a Cross-sectional Survey.

ABSTRACT:

Introduction

Individuals with Duchenne muscular dystrophy (DMD) require increasing care as they age, and caregiver impact can be considerable. The objectives were to investigate the amount of time spent caregiving and working, the extent of adjustments to paid work, and impact on productivity among DMD caregivers in the USA.

Methods

Caregivers of individuals with DMD were recruited through a US-based DMD advocacy group. Measures of impact included time spent on caregiving activities, an overall caregiver impact rating scale ranging from 0 to 10, frequency of work adjustments, and the Work Productivity and Activity Impairment Questionnaire for DMD (WPAI:DMD-CG, v2.0). Survey responses were stratified by care recipient ambulatory status and caregiver employment status.

Results

Of 106 caregivers, 82% were mothers; mean (standard deviation) caregiver age was 46 (8.0) years. Eighty-nine percent of respondents reported caring for one individual with DMD and 11% for two individuals with DMD. Sixty-eight percent of respondents were employed. WPAI scores indicated an overall activity impairment of 41%; work time missed was 8%; impairment at work was 31%; work productivity loss was 35%. Across all caregivers, 77% experienced at least one job-related change due to caregiving: 26% took a job with less income potential, 25% quit, 34% changed their role/responsibilities, 29% reduced their hours, and 34% took leave from work to care for their child(ren) with DMD.

Conclusions

This survey extends prior work by providing contemporary, US-specific estimates of work adjustments necessary among caregivers of individuals with DMD. The results demonstrate the considerable impact caregiving has on paid work and productivity.

SUBMITTER: Dunne JS 

PROVIDER: S-EPMC12909370 | biostudies-literature | 2026 Feb

REPOSITORIES: biostudies-literature