Treatment experience, burden, and unmet needs (TRIBUNE) in multiple sclerosis: the costs and utilities of MS patients in Canada.

BACKGROUND Multiple sclerosis (MS) is the most common neurological disease among young adults in Canada, but few studies to date have measured the burden imposed by MS on Canadian society. OBJECTIVES To estimate the costs and quality of life of MS patients in Canada, while focusing on the burden of relapses and increasing disease severity. METHODS MS patients in Canada (N=241) completed a web-based questionnaire which captured information on demographics, disease characteristics, severity (Expanded Disability Status Scale [EDSS]), comorbidities, relapses, as well as resource consumption and quality of life associated with MS. RESULTS Most patients (74%) reported treatment with disease modifying therapies (DMTs). 54% of patients with the relapsing-remitting form of the disease with an EDSS score ≤ 5 had experienced at least one relapse in the past year. The mean cost per patient per year increased with worsening disability, and was estimated at Can $30,836 for patients with mild disability (EDSS score 0-3), Can $46,622 for patients with moderate disability (EDSS 4-6.5), and Can $77,981 for patients with severe disability due to MS (EDSS score 7-9). The excess costs of relapsing-remitting MS patients with EDSS score ≤ 5 that could be attributable to relapse(s) were estimated at Can $10,512. More severe disease and experiencing a relapse were also associated with poorer quality of life of MS patients. CONCLUSIONS Costs of MS patients are higher today than shown in previous studies. Disease progression and relapses are associated with increased economic and quality of life burden. Effective treatment that reduces relapse frequency and prevents progression could impact both costs and quality of life and may help to reduce the societal burden of MS.