Psychosocial Burden of Duchenne Muscular Dystrophy on Caregivers in Australia: A Cross-Sectional Study.

BACKGROUND

Duchenne 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.

METHODS

A 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.

RESULTS

Seventy-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, p = 0.023). Clinically relevant depressive symptoms (BDI-II ≥ 14) were observed in 13 of 19 caregivers of ventilated patients (68.4%) and 46 of 54 caregivers of unventilated patients (85.2%). The odds ratio was 0.38 (95% CI 0.095-1.59, p = 0.17). After covariate adjustment, higher OCBS difficulty and time scores remained associated with lower EQ-5D-5L scores, whereas BDI-II and WPAI domains did not. Global interaction tests did not provide evidence that associations differed by DMD stage.

CONCLUSIONS

Caregiver 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.