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Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy
Published on: January 12, 2019
Quality of Life and Financial Burden in Duchenne Muscular Dystrophy in Greece: Insights into Health System
Eleni Katsomiti1, Catherine Kastanioti1, Elisabeth Chroni2
1Department of Business Administration and Organizations, University of Peloponnese, 24100 Kalamata, Greece.
Insights
Children with Duchenne Muscular Dystrophy in Greece experience reduced quality of life and financial strain post-pandemic. Enhanced support is crucial for these rare disease families.
Area of Science:
- Rare disease research
- Public health
- Pediatric healthcare
Background:
- The COVID-19 pandemic significantly impacted healthcare systems globally.
- Individuals with rare diseases faced disproportionate challenges during the pandemic.
- This study focuses on Duchenne Muscular Dystrophy (DMD) in Greece.
Purpose of the Study:
- To investigate the health-related quality of life (HRQoL) of children with DMD post-pandemic.
- To assess the financial burden experienced by families of children with DMD.
- To provide insights into the Greek health system's performance for rare diseases.
Main Methods:
- A multicenter, cross-sectional study was conducted in two Greek neuromuscular clinics.
- Fifty families of children with DMD participated (67% response rate).
- Standardized quality of life instruments (PedsQL™) and socioeconomic questionnaires were utilized.
Main Results:
- Children with DMD reported moderate-to-severe decreases in physical and emotional well-being.
- Families incurred substantial out-of-pocket expenditures.
- Lower HRQoL scores correlated with greater financial strain and wheelchair dependency; insurance positively impacted psychosocial functioning.
Conclusions:
- Greek families affected by DMD continue to face significant financial and psychosocial challenges post-pandemic.
- The study highlights the need for improved financial protection and coordinated care for rare diseases.
- Equitable access to support services is essential for managing DMD.
Abstract:
Background: 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. Methods: 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. Results: 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. Conclusions: 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.
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