OBJECTIVES: DMD is a rare, pediatric neuromuscular disease characterized by diminishing functional ability and loss of independent ambulation. As DMD progresses, affected individuals rely more heavily on their caregivers. Given that contemporary US-specific data are lacking, the objective was to characterize the experiences of DMD caregivers.

METHODS: US-based caregivers completed an online survey between March-May 2023. Survey questions captured the extent of informal (unpaid) and formal (paid) care, informal caregiver burden, and the impact of accessibility barriers on family plans. Informal caregiver burden was measured on a scale of 0 (providing care is not challenging) to 10 (providing care is very challenging). Descriptive analyses were performed of survey responses. Results were stratified by ambulatory status.

RESULTS: One hundred six caregivers were surveyed. Mean age was 46 years, 81% were mothers, and 11% cared for two individuals with DMD. The mean care recipient age was 14.5 years and 47% (n=55/118) were non-ambulatory. Caregivers reported spending a median of 6 hours/day caregiving: 4.5 hours/day for caregivers of ambulatory, and 8 hours/day for caregivers of non-ambulatory, care recipients. Median caregiver burden was 5/10; 4/10 for caregivers of ambulatory, and 6/10 for caregivers of non-ambulatory care recipients. Seventy-five percent of caregivers reported using additional informal caregiving (median 2 hours/day; 1.9 hours for ambulatory and 3 hours for non-ambulatory care recipients). Twenty-six percent of respondents reported using formal caregiving; 13% of caregivers of ambulatory, and 42% of non-ambulatory care recipients. Seventy-four percent of families frequently changed everyday plans because of accessibility barriers in their community; 62% of caregivers of ambulatory, and 85% of caregivers of non-ambulatory, care recipients.

CONCLUSIONS: While caregiver impact in DMD has been previously described in international studies, US-based assessments are lacking. These findings highlight the substantial amount of time, energy, and commitment required of DMD caregivers; and the increasing caregiving demands associated with DMD progression.