OUT-OF-POCKET COSTS AND FINANCIAL BURDEN OF DUCHENNE MUSCULAR DYSTROPHY IN GREECE: A CROSS-SECTIONAL STUDY
Author(s)
Eleni Katsomiti, PhD1, Catherine Kastanioti, PhD1, George Mavridoglou, PhD1, Charalampos Tzanetakos, MSc2, George Gourzoulidis, PhD2.
1University of the Peloponnese, Kalamata, Greece, 2Health Through Evidece, Athens, Greece.
1University of the Peloponnese, Kalamata, Greece, 2Health Through Evidece, Athens, Greece.
OBJECTIVES: To assess the household-level economic burden associated with Duchenne Muscular Dystrophy (DMD) in Greece, with emphasis on out-of-pocket expenditures, state financial support, and key determinants of financial strain relevant to rare disease policy.
METHODS: A multicenter, cross-sectional study was conducted among families of children with genetically confirmed DMD receiving care at two specialized neuromuscular centers in Greece. A structured socioeconomic questionnaire collected data on household income, regular and unexpected DMD-related out-of-pocket expenditures, insurance coverage, receipt of state allowances, and employment impact on caregivers. Annual regular costs were estimated by annualizing reported monthly expenditures, while unexpected costs were recorded as lump-sum expenditures incurred during the previous 12 months. Financial burden was assessed both in absolute monetary terms (€) and as a proportion of annual household income
RESULTS: Financial data were available for 43 households. Most families (74%) reported an annual household income below €25,000. Regular out-of-pocket expenditures were common, with 28% of households reporting monthly expenses equal to or exceeding the value of their state allowance. Unexpected annual expenditures were frequently observed, particularly among families with wheelchair-dependent children, and in some cases represented up to 25% of annual household income. Families receiving the extra-institutional allowance (€846/month) experienced the highest absolute expenditures and the most frequent unexpected costs; however, 18% still reported expenses exceeding the total annual allowance received. Families receiving the lower social welfare allowance (€338/month) consistently reported uncovered monthly expenditures. Greater financial burden was significantly associated with older patient age, wheelchair dependency, receipt of state allowances, and residence in urban areas.
CONCLUSIONS: DMD imposes a substantial and persistent financial burden on affected households in Greece, which is insufficiently mitigated by existing support mechanisms. The findings highlight the need for stronger financial protection policies and better alignment of state support with the evolving clinical and caregiving needs of families living with DMD.
METHODS: A multicenter, cross-sectional study was conducted among families of children with genetically confirmed DMD receiving care at two specialized neuromuscular centers in Greece. A structured socioeconomic questionnaire collected data on household income, regular and unexpected DMD-related out-of-pocket expenditures, insurance coverage, receipt of state allowances, and employment impact on caregivers. Annual regular costs were estimated by annualizing reported monthly expenditures, while unexpected costs were recorded as lump-sum expenditures incurred during the previous 12 months. Financial burden was assessed both in absolute monetary terms (€) and as a proportion of annual household income
RESULTS: Financial data were available for 43 households. Most families (74%) reported an annual household income below €25,000. Regular out-of-pocket expenditures were common, with 28% of households reporting monthly expenses equal to or exceeding the value of their state allowance. Unexpected annual expenditures were frequently observed, particularly among families with wheelchair-dependent children, and in some cases represented up to 25% of annual household income. Families receiving the extra-institutional allowance (€846/month) experienced the highest absolute expenditures and the most frequent unexpected costs; however, 18% still reported expenses exceeding the total annual allowance received. Families receiving the lower social welfare allowance (€338/month) consistently reported uncovered monthly expenditures. Greater financial burden was significantly associated with older patient age, wheelchair dependency, receipt of state allowances, and residence in urban areas.
CONCLUSIONS: DMD imposes a substantial and persistent financial burden on affected households in Greece, which is insufficiently mitigated by existing support mechanisms. The findings highlight the need for stronger financial protection policies and better alignment of state support with the evolving clinical and caregiving needs of families living with DMD.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
PCR30
Topic
Health Policy & Regulatory, Patient-Centered Research, Real World Data & Information Systems
Disease
Rare & Orphan Diseases