Costs and quality of life in multiple sclerosis : a cross-sectional observational study in the UK

We performed a cross-sectional, "bottom-up" observational study of resource consumption and quality of life of patients with multiple sclerosis (MS) in the United Kingdom. Three centers participated in the study. Patients received a questionnaire either by mail or during a clinic visit, and a total of 619 patients returned the questionnaire (the answer rate being around 70%). Patients provided information on all resource consumption, medical and non-medical, work absence and informal care related to their MS. Disease scores (Expanded Disability Status Scale, EDSS) were available for a majority of patients from the study centers, and were assigned using a matrix of disease (mobility) descriptions and EDSS scores. Mean total cost per patient and year was 16'717 £. When this cost is extrapolated to an estimated patient population in the UK of 80'000, total costs to society are estimated at 1.34 billion £. Direct costs represented 28%, informal care accounted for 26% and indirect costs amounted to 46%. Of the direct costs, an estimated £ per patient or % of total costs are paid for by the NHS. Intangible costs were estimated at 5000 £ per patient and year. The mean age of the cohort was 44 years (disease onset 34), the mean utility measured with EQ-5D was 0.487 (0.919 to -0.594), and the mean EDSS score 5.1 (1.0 to 9.5). All costs (direct, informal care, indirect) increased with increasing EDSS scores, while utilities decreased.