Abstract
BACKGROUND: The objective of this study was to estimate costs to society and patients' quality of life (QoL) at all levels of disease severity (measured with the Expanded Disability Status Scale, EDSS) in Brazil. METHODS: The study was part of an international, cross-sectional burden-of-illness study carried out in collaboration with national MS patient organizations. All information was collected directly from patients using a validated questionnaire. Direct costs were estimated both from societal and payer perspectives, while total costs are presented as societal costs. RESULTS: The survey included 694 patients (response rate 21%; mean age 40.8 years). 95% of patients were of working age, and around half were working. The mean EDSS score was 3.2 (62.5% of patients with EDSS <3). Relapses were reported by 18.9% of patients. Fatigue affected almost all patients (94%) regardless of EDSS level, and cognitive difficulties were reported by 69.1% of patients. Mean utility ranged from 0.77 at EDSS 0 to negative values at EDSS 9, with a mean score of 0.58; utility was affected by relapses. Total mean annual cost was R$33,872 (€ 8,000) per patient in the societal perspective, with direct costs representing 81% (R$ 27,355, € 6,500). Direct costs for the payer amounted to R$ 16,793 (€ 4,000)/patient. CONCLUSIONS: This study included a population with relatively mild and early disease, with a majority of patients with relapsing disease and thus on DMD treatment. It is not possible to conclude directly on the total cost of MS in Brazil. Nevertheless, resource quantities used, QoL and MS symptoms are very similar to what was seen in the European survey.