A new international study published in BMC Neurology highlights the significant burden experienced by caregivers of people living with Duchenne muscular dystrophy (DMD).
Researchers analyzed data from the Adelphi Real World Disease Specific Programme, collected between October 2022 and November 2023. Caregivers of 216 individuals with DMD in France, Germany, Spain, the U.S. and Japan completed questionnaires assessing work impact, daily activity limitations and overall quality of life.
Key findings highlight significant variation in caregiver burden across regions. In the United States, nearly 39% of caregivers worked full-time, compared with 23.5% in Europe and only 7.4% in Japan.
Still, caregivers reported substantial disruptions to work and everyday life across all regions. On average, caregivers reported approximately 9.7% absenteeism and 37.8% presenteeism (physically being at work, but not able to work at an optimal level). This led to an overall work impairment of more than 42%.
Caregivers also experienced activity impairment outside of work, averaging 49% overall, with caregivers of nonambulatory individuals with DMD experiencing the highest burden.
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While most caregivers reported no major problems with mobility or self-care, levels of anxiety and depression varied significantly across regions. For example, only 17.7% of U.S. caregivers reported having no depression or anxiety, compared to more than 80% of caregivers in Japan, suggesting the psychosocial toll of caregiving may be influenced by cultural and support system differences.
The study’s authors emphasize that non-professional caregiving in DMD poses a substantial burden on families, with impacts on quality of life, work and daily functioning, particularly for those caring for individuals with more advanced disease.
“Further research to better understand the reasons for regional differences might provide insight into potential means to reduce the burden on caregivers,” the researchers concluded.
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