Quantifying the burden of caregiving in Duchenne muscular dystrophy

Duchenne muscular dystrophy (DMD) is a rare pediatric neuromuscular disease associated with progressive muscle degeneration and extensive care needs. Our objective was to estimate the caregiver burden associated with DMD. We made cross-sectional assessments of caregiver health-related quality of life (HRQL) and burden using the EuroQol EQ-5D, a Visual Analogue Scale (VAS), the SF-12 Health Survey, and the Zarit Caregiver Burden Interview (ZBI) administered online. Results were stratified by disease stage (early/late ambulatory/non-ambulatory) and caregivers' rating of patients' health and mental status. In total, caregivers to 770 patients participated. Mean EQ-5D utility ranged between 0. 85 (95 % CI 0. 82-0. 88) and 0. 77 (0. 74-0. 80) across ambulatory classes and 0. 88 (0. 85-0. 90) and 0. 57 (0. 39-0. 74) across caregivers' rating of patients' health and mental status. Mean VAS score was 0. 74 (0. 73-0. 75), mean SF-12 Mental Health Component Summary score 44 (43-45), and mean ZBI score 29 (28-30). Anxiety and depression, recorded in up to 70 % of caregivers depending on patients' health and mental status, was significantly associated with annual household cost burden (>5000 vs. 50 vs. <25 h 3. 35, 2. 32-4. 83) (p < 0. 007). We show that caring for a person with DMD can be associated with a substantial burden and impaired HRQL. Our findings suggest that caregivers to patients with DMD should be screened for depression and emphasize the need for a holistic approach to family mental health in the context of chronic childhood disease.