Quality of Life and Financial Burden in Duchenne Muscular Dystrophy in Greece: Insights into Health System Performance in the Post-Pandemic Context

Background. The COVID-19 pandemic disrupted healthcare delivery systems worldwide, disproportionately affecting individuals with chronic and rare diseases. This study explores the status in the post-pandemic context on the quality of life and financial burden experienced by children with Duchenne Muscular Dystrophy and their families in Greece, a context that reflects broader challenges in healthcare system performance during crises. Methods. A multicenter, cross-sectional study was conducted across two neuromuscular clinics in Greece. Of 75 eligible families, 50 (response rate 67%) participated through structured interviews with patients and caregivers, using standardized instruments, the PedsQL™ 4.0 Generic Core Scale and the PedsQL™ 3.0 DMD Module to assess health-related quality of life, and a socioeconomic questionnaire to evaluate caregiving burden and out-of-pocket expenditures. Descriptive statistics and correlation analyses were applied to examine associations between functional status, financial strain, and psychosocial indicators. Results. Participants reported moderate-to-severe impacts on physical and emotional well-being, alongside significant caregiving and financial burdens. Households incurred substantial out-of-pocket costs related to home care and non-reimbursed services. Health-related quality of life outcomes were inversely associated with care-related financial stress and functional limitations. Conclusions. The findings highlight ongoing systemic challenges faced by families living with Duchenne Muscular Dystrophy in Greece during the post-pandemic period. While the cross-sectional design does not allow causal attribution to COVID-19 pandemic, the results provide valuable insights into current health system pressures and areas where financial protection and coordinated care pathways could be strengthened.