ArticleHealthcare (Basel, Switzerland)2026
Psychosocial Burden of Duchenne Muscular Dystrophy on Caregivers in Australia: A Cross-Sectional Study.
Article in Healthcare (Basel, Switzerland), 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
backgroundDuchenne muscular dystrophy (DMD) is a rare, progressive neuromuscular disorder associated with substantial psychosocial demands for family caregivers. Australian evidence remains limited. This study quantified caregiver burden, health-related quality of life, depressive symptoms and work impairment, with a primary comparison by ventilation status and exploratory analyses across functional stages.
methodsA cross-sectional online survey was conducted from February to March 2025 through national advocacy groups. Validated instruments included the Oberst Caregiving Burden Scale (OCBS), Work Productivity and Activity Impairment Questionnaire (WPAI), EuroQol-5 Dimensions-5 Levels (EQ-5D-5L) and Beck Depression Inventory-II (BDI-II). Responses were screened using IP address, completion status and internal consistency before reanalysis.
resultsSeventy-three caregivers were included. Most were mothers (67%) and were aged 35-44 years (51%). Mean OCBS difficulty scores were higher among caregivers of ventilated than unventilated patients (39.6 vs. 33.1,
conclusionsCaregiver psychosocial burden was substantial in both ventilation groups. Ventilation status was associated with caregiving difficulty, but the clinical importance of the observed difference is uncertain. Depressive symptoms were common irrespective of ventilation status. These cross-sectional findings support attention to caregiver wellbeing across DMD care but do not establish change over the disease course.
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