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

  • 0Broadstreet Health Economics and Outcomes Research, 177 W 7 Ave, Vancouver, BC, V5Y 1L8, Canada.
Advances in Therapy +

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December 30, 2025

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December 30, 2025

View abstract on PubMed

Summary

This summary is machine-generated.

Caregivers for individuals with Duchenne muscular dystrophy (DMD) face significant work challenges, with most experiencing job changes and productivity loss due to caregiving responsibilities. This impacts their employment and overall well-being.

Area Of Science

  • Neurology
  • Public Health
  • Sociology

Background

  • Duchenne muscular dystrophy (DMD) necessitates extensive, lifelong care, significantly impacting family dynamics and caregiver well-being.
  • Caregiver burden in DMD is substantial, affecting daily life, work, and overall quality of life.

Purpose Of The Study

  • To quantify the time commitment and work adjustments made by caregivers of individuals with DMD in the USA.
  • To assess the impact of caregiving on paid work and productivity among DMD caregivers.

Main Methods

  • A survey was distributed to caregivers of individuals with DMD recruited via a US-based advocacy group.
  • Data collected included time spent caregiving, caregiver impact ratings, work adjustment frequency, and the Work Productivity and Activity Impairment Questionnaire for DMD (WPAI:DMD-CG).

Main Results

  • Of 106 caregivers surveyed, 68% were employed, reporting significant work productivity loss (35%) and activity impairment (41%).
  • Seventy-seven percent of caregivers made job-related changes, including reduced hours, role changes, or quitting their jobs.
  • Caregiving for individuals with DMD led to substantial work time missed (8%) and impairment at work (31%).

Conclusions

  • Caregiving for individuals with DMD imposes considerable demands on paid employment and productivity.
  • Findings highlight the need for supportive policies and resources for DMD caregivers to mitigate work-related challenges.

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