US researchers discovered that caregivers of patients with Duchenne muscular dystrophy (DMD) fared poorly on most quality of life (QOL) outcomes and faced significant hurdles in work life, according to a study published in the Journal of Patient-Reported Outcomes.
There are significant challenges in chronic caregiving, and caregiving in a DMD context was shown to have additional challenges in matters unique to the disease. These were likely related to the early age of diagnosis, the disease trajectory that is progressive in nature, presented motor disabilities, and a shortened life expectancy.
Studies have previously indicated that care for DMD exacts a significant toll on caregivers, including poorer quality of sleep, the development of mental health issues, problems with social and sexual functioning, and a reduction in work productivity.
The present study “examines the impact of DMD on family-member caregivers in terms of QOL, life stress, and indirect costs,” Schwartz et al wrote.
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The researchers conducted an internet-based survey for caregivers of patients with DMD, as well as a nationally representative comparison group of parents of patients without DMD as stratified by the Child Age Group. They then measured the impact of their caregiving on QOL parameters, including resilience, stressful life events, out-of-pocket expenditures, and more.
“Compared to parents without a DMD child, DMD caregivers reported better physical health but worse mental health, positive affect/well-being, environmental mastery, difficulty paying bills, and more hours missed from work,” the research team wrote.
They found that many caregivers of patients with DMD made significant sacrifices to cater to the patients under their care, such as curtailing their educational and professional ambitions and significantly modifying their homes to make them disability-accessible. Caregiving for patients with DMD in the teenage category proved most challenging.
“In summary, DMD has a high and broad impact, not only on the patients who suffer from this disease but also on their caregivers. DMD caregivers fared worse on most QOL outcomes and faced more hurdles in their educational and work life,” the authors concluded.
Schwartz, C.E., Stark, R.B., Audhya, I.F. et al. Characterizing the quality-of-life impact of Duchenne muscular dystrophy on caregivers: a case-control investigation. J Patient Rep Outcomes. Published online November 20, 2021. doi:10.1186/s41687-021-00386-y