OBJECTIVES: Patients with DMD require increasing care as they age; and caregiver impact can be considerable. As few US-specific data on caregiver work impact are available, the objectives were to investigate the extent of paid work accommodations and lost productivity resulting from DMD caregiving.

METHODS: Caregivers of boys with DMD were recruited through a US-based DMD advocacy group. Participants completed an online survey focusing on work experience and accommodations due to caregiving. Work Productivity and Activity Impairment for DMD caregivers (WPAI:DMD-CG, v2.0) questions were included for those caring for a single care recipient with DMD; the WPAI is not validated for caregivers of multiple care recipients. Survey responses were tabulated; higher WPAI scores indicated greater impairment.

RESULTS: Of 106 caregivers, 81% were mothers; mean (range) caregiver age was 46 (23-70) years. Half of households (49%) earned ≥$100,000 annually. Ninety-four (89%) participants reported caring for one individual with DMD. Seventy-two respondents (68%) were employed, 52 (55%) full-time. WPAI scores indicated that in the past week, due to caregiving, overall activity impairment was 40.7%. For those currently employed worktime missed (absenteeism) was 8.4%; impairment at work (presenteeism) was 30.5%; and work productivity loss (absenteeism plus presenteeism) was 34.8%. Of 12 caregivers (11%) caring for two individuals with DMD, 8 (67%) were employed, and 5 (62.5%) reported their work productivity was affected by DMD. Across all caregivers, 82 (77%) experienced at least one work-related change due to caregiving: 26% took a lower paying job, 25% quit, 34% changed their role/responsibilities, 29% reduced their hours, and 34% took time off.

CONCLUSIONS: The results demonstrate the considerable paid work impact associated with caregiving for one or two individuals with DMD. While this survey extends on prior work by providing contemporary US-specific estimates, the findings are limited by the limited number of caregivers of two individuals with DMD included.