Patients with multiple sclerosis: a burden and cost of illness study

BACKGROUND: Multiple sclerosis (MS) is a chronic neuroinflammatory and neurodegenerative disease negatively impacting patients’ physical, psychological and social well-being with a significant economic burden. OBJECTIVES: The study estimates MS burden and cost of illness in Italy from a societal perspective in 2019. METHODS: Information on the impact of the disease on daily activities, symptoms, employment, resource utilization and the role of caregivers was collected through questionnaires completed by 944 patients and caregivers. Results were stratified according to both disease severity and payer. Mean costs and overall costs were extrapolated from the sample to the Italian MS population considering published distribution of severity. RESULTS: The study showed a great impact of the disease on daily and work activities increasing with the disability. The overwhelming burden of fatigue emerged. Mean annual costs were estimated at €39,307/patient (€29,676, €43,464 and €53,454 in mild, moderate and severe cases, respectively). Direct healthcare costs were the major component (€21,069), followed by indirect costs (€15,004). The overall cost of the disease in Italy was €4.8 billion. The National Healthcare System (NHS) sustained most of the costs (80%), most notably direct healthcare costs, while patients paid almost all non-healthcare expenses. CONCLUSIONS: This study confirmed that MS carries a substantial burden to patients and society, highlighting the need for awareness of this disease. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00415-022-11169-w.