Abstract

OBJECTIVES: This study aimed to capture the socio-economic costs, Health Related Quality of Life (HRQoL) and experience of Multiple Sclerosis (MS) patients in France. METHODS: An online survey of non-institutionalised MS patients collected data on demographic, disease and clinical related variables, Disease Modifying Drug (DMD) consumption, healthcare resource and informal care utilisation, productivity losses and HRQoL (EQ-5D-5L, EQ-5D-5L VAS) and patients’ experience, gauged by questions on treatment satisfaction, future treatment expectations, caregiving arrangements, preferred sources of information for MS and preferred strategy for deciding about their therapy. Three national MS organisations were invited to voluntarily share the survey with their members. RESULTS: Using 2014 as a reference price, a sample of 97 individuals, demonstrated an average annual MS patient cost of €24,403 (±18,538), 57% of which (€13,838, ±15,796) accounted for indirect costs due to productivity losses and 36% and 7% for mean annual direct, health and non-health care costs respectively. Indirect costs were primarily driven by permanent work disability and temporary sick leave (42% and 12% of mean annual cost respectively), whereas direct costs were shaped by DMD utilisation, formal/informal caregiving and inpatient care (31%, 7% and 5% of mean annual cost respectively). Mean EQ-5D-5L index and VAS scores were 0.49 (±0.3) and 60 (±22.6) respectively, whereas patient reported outcomes underscored a moderate satisfaction (7.4 out of 10) with the care received by the national health system, the need for a new therapy that targets symptoms of Mobility and Fatigue/Weakness (43% and 40% of respondents respectively) and the need to receive formal/informal care (7%). CONCLUSIONS: MS poses a significant cost burden for the French society, with medication and indirect costs representing 88% of total average costs and substantial unmet needs being reported in the clinical management and social care currently received by MS patients in France.

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