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.

Resu

SUBMITTER: Dunne JS 

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

REPOSITORIES: biostudies-literature