This cost-of-illness analysis based on information from 921 patients in Italy is part of a Europe-wide cost-of-illness study in multiple sclerosis (MS). The objective was to analyze the costs and quality of life (QOL) related to the level of disease severity and progression. Patients registered with the Italian MS patient organization were asked to participate in a mail survey, and 31% responded. The questionnaire asked for details on the disease (type of disease, relapses, level of functional disability), information on all medical and non-medical resource consumption, and informal care and work capacity (sick leave and early retirement). In addition, patients were asked about their current QOL (in the form of utility) and the level of fatigue. The mean age of respondents was 46 years, and 8.5% were 65 years or older. As many as 20% of patients had severe disease (Expanded Disability Status Scale [EDSS] score of ≥7), 47% had moderate disease (EDSS score of 4–6.5) and only 31% had mild disease (EDSS score of 0–3). Thus, the mean EDSS score in the sample was 4.6 (median 5.0), with a utility of 0.53 (range: 0 = death to 1 = full health) and a fatigue level of 6.4 (range: 1 = not tired to 10 = extremely tired). Costs and utility are highly correlated with disease severity. Workforce participation decreases from approximately 80% in early disease to less than 10% in the very late stages. Total costs increase fivefold between an EDSS score of 0–1 and a score of 7. Health-care costs, however, show a limited increase with worsening disease – hospitalization increases from € 800 per patient to € 3200, and ambulatory care increases from € 900 to € 1500. Productivity losses, on the other hand, increase by a factor of 12, while informal care increases from € 500 at an EDSS score of 0–1 to nearly € 25 000 at an EDSS score of 7, and € 39 000 at an EDSS score of 8–9. Hence, total mean costs per patient are determined essentially by the distribution of the severity levels in the sample, increasing from € 12 000 at an EDSS score of 0–1 to € 57 000 at an EDSS score of 7, and € 71 000 at an EDSS score of 8–9. The same is true for utility, which decreases from 0.80 to 0.06 as the disease becomes severe. However, the utility loss compared to the age- and gender-matched general population is high at all levels of the disease, leading to an estimated annual loss of 0.3 quality-adjusted life year (QALY) per patient. Relapses for patients with an EDSS score of <5 are associated with a cost of approximately € 4000 and a utility loss of 0.18 during the quarter in which they occur.
Multiple sclerosisCostsUtilityQuality of lifeItaly