Costs and quality of life of multiple sclerosis in the United Kingdom

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Abstract
This cost-of-illness analysis for the United Kingdom is part of a Europe-wide study on the costs of multiple sclerosis (MS). The objective was to analyze the costs and quality of life (utility) related to the level of disease severity. People with MS from a database administered by a UK charity (the MS Trust) were asked to participate in the survey by answering a postal questionnaire. In addition to details on the disease (type of disease, relapses, level of functional disability), the questionnaire asked for information on all resource consumption, medical, non-medical, work absence and informal care as well as utility. The response rate was 19%, and a total of 2048 people were included. The mean age of the cohort was 51 years, and 23% of people were ≥60 years of age. Disease severity was concentrated in people with moderately severe MS (Expanded Disability Status Scale [EDSS] score of 4 to 6.5), with 21, 60 and 19% of people reporting mild, moderate and severe disease, respectively. Costs and utility are highly correlated with disease severity. Mean annual costs for all people in the study increase from approximately £ 12.000 at an EDSS score <4 to almost £ 60.000 at an EDSS score ≥7. In particular, employment rates are reduced from 82% in early disease to 2% at an EDSS score of 8, while the costs of inpatient care, investments, informal care and productivity losses increase by more than tenfold between an EDSS score of 0-1 and a score ≥7. Utility decreases from 0.92 at an EDSS score of 0 to a state worse than death in the most severe state (–0.18 at an EDSS score of 9). Compared to the results in an earlier cost study in the United Kingdom using a comparable methodology, costs have substantially increased, by roughly 40%. Part of the increase is due to a higher use of disease-modifying drugs and, possibly linked with this, a higher use of ambulatory care and services. Another part of the increase is most likely due to an increased age in the current sample, with more patients on early retirement due to MS and more intense use of informal care. However, another reason may lie in the methodology, e.g. different unit costs or differences in the sample distribution, despite a similar mean EDSS score of 5.1.