Quality of Life and Financial Burden in Duchenne Muscular Dystrophy in Greece: Insights into Health System Performance in the Post-Pandemic Context
<b>Background:</b> The COVID-19 pandemic disrupted healthcare systems, disproportionately affecting individuals with rare diseases. This study explores the health-related quality of life and financial burden in the post-pandemic context among children with Duchenne Muscular Dystrophy and their families in Greece, providing insights into health system performance. <b>Methods:</b> A multicenter, cross-sectional study was conducted in two neuromuscular clinics in Greece. Fifty families (response rate 67%) completed standardized quality of life instruments (PedsQL™ 4.0 Generic Core Scale; PedsQL™ 3.0 DMD Module) and a socioeconomic questionnaire. Descriptive and correlation analyses assessed associations between functional status, financial strain, and psychosocial indicators. <b>Results</b>: Children with Duchenne Muscular Dystrophy reported moderate-to-severe reductions in physical and emotional well-being, and substantial out-of-pocket expenditures. Families with greater financial strain or wheelchair-dependent children had significantly lower health-related quality of life scores. Insurance coverage was positively associated with emotional and psychosocial functioning. <b>Conclusions</b>: Greek families living with Duchenne Muscular Dystrophy continue to face significant financial and psychosocial challenges in the post-pandemic period. While the cross-sectional design does not allow causal attribute to COVID-19 pandemic, the results underscore the need to strengthen financial protection, coordinated multidisciplinary care, and equitable access to support services for rare disease management.
Authors
- George Mavridoglou (ORCID: https://orcid.org/0000-0002-9357-4788)
- Elisabeth Chroni (ORCID: https://orcid.org/0000-0001-9237-4963)
- Catherine Kastanioti (ORCID: https://orcid.org/0009-0001-8918-4592)
- Evangelos Pavlou (ORCID: https://orcid.org/0000-0002-2636-9768)
- Eleni Katsomiti
Institutions
- University of Peloponnese (GR)
- University of Patras (GR)
- AHEPA University Hospital (GR)
Publication Details
- Journal
- Healthcare
- Published
- 2025-11-08
- DOI
- https://doi.org/10.3390/healthcare13222835
- Primary Topic
- Neurogenetic and Muscular Disorders Research
- Type
- article
- Field-Weighted Citation Impact
- 0.00