Costs and quality of life of multiple sclerosis in Sweden

The study objective was to analyse the costs and quality of life (QOL) of multiple sclerosis (MS) related to disease severity in Sweden as part of a study in nine European countries. Information on demographics, disease, resource utilisation, informal care needs, work capacity and QOL (utility) was collected using a questionnaire that was sent to patients registered with the Swedish organisation of patients with neurological disabilities (Neurologiskt Handikappades Riksförbund). The study used a prevalence-based and cross-sectional approach, and costs were estimated from a societal perspective. A total of 1,339 patients were included in the analysis. Seventy-three percent of patients were female, and the mean age was 53 years (standard deviation [SD], 12 years). The mean Expanded Disability Status Scale (EDSS) score was 5.1 (SD, 2.2); only 29% of patients had mild disease (EDSS score <4), 46% had moderate disease and 25% had severe disease (EDSS score > or =7). Costs were significantly correlated with disease severity, increasing sevenfold from around euro 16.000 at EDSS scores of 0-1 to euro 116.000 at EDSS scores of 8-9. At the same time, utility decreased with worsening disease from 0.825 to 0.047, with a mean established at 0.546 (SD, 0.287). This is significantly lower than utilities for an age- and gender-matched sample of the general population, which would be estimated at 0.80-0.85. Patients with a relapse during the last 3 months had a significant cost increase, of euro 3.080, and a utility loss of 0.088. Costs and utilities are highly correlated with EDSS score, and the mean cost per patient in the sample is thus heavily influenced by the severity distribution in the sample. Compared to European estimates, patients with moderate and severe disease in our sample appear to be overrepresented, and costs can therefore not be directly extrapolated to the overall MS population in Sweden without adjustment. When correcting for estimated actual prevalence and use of disease modifying drugs (DMDs), the total cost of MS in Sweden is estimated at euro 600 million. Compared to an earlier cost study in 1998 that included a similar sample, and adjusting for differential timing and estimated national use of DMDs, costs have increased by approximately 5% between 1998 and 2005.