Abstract

Multiple sclerosis (MS) is a debilitating neurodegenerative disease characterized by chronic inflammation, demyelination, and neuronal loss. MS places a considerable financial burden on society. However, data quantifying the total societal burden including extra costs, forgone income and production losses endured by MS patients, their caregivers and employers in France is lacking. The present study, PETALS, was undertaken to address the existing gap and estimate the financial burden (direct and indirect) imposed by MS in the French population. Between October and November 2020, 208 French adults with a confirmed diagnosis of MS were recruited via MSCopilot®, a MS self-assessment digital tool, and several MS patients’ networks. A patient-based questionnaire consisting of 142 questions was used to retrieve patients' insights. Indirect costs were estimated using a combination of top-down and bottom-up approaches. Data on direct costs were retrieved from Assurance Maladie. Out-of-pocket expenses (OOPE) incurred by MS patients were also reported. All costs were expressed in €2020. Data from the survey were extrapolated to the overall French MS population. The societal cost of MS was estimated to be €2.7 Billion (Bn) a year in France. Direct costs amount to €1.4 Bn a year. Indirect costs amount to €1.3 Bn a year. Loss of income/costs due to reduction in work time contributed over half of the indirect cost (53.3%), followed by health-related aids/benefits (42.5%). Furthermore, OOPEs incurred by MS patients contributed to a notable proportion of the total annual costs (over €90 million). The results from the current study showed that MS not only affected the productivity and income of individuals but also the working time of caregivers. Understanding the magnitude of the socioeconomic burden posed by MS may provide valuable insights for optimizing resource allocation and devising effective disease management strategies that can reduce its impact.

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