Stoppers and non-starters of disease-modifying treatment in multiple sclerosis.

OBJECTIVES: To explore the frequency of non-starters and stoppers of disease-modifying therapy (DMT) in a cohort of people recently diagnosed with multiple sclerosis (MS) and to identify reasons for non-starting or stopping DMT measured by demographic variables, social support [The Interpersonal Support Evaluation List (ISEL)] and disease-related stress [The Impact of Event Scale (IES)]. MATERIALS AND METHODS: A multicentre retrospective cohort study using postal surveys completed by people with MS was performed, comprising all patients diagnosed with MS during 2000-2007 at four university clinics in Norway. RESULTS: Of the 424 respondents, 180 (42%) were still using the first prescribed DMT, 83 (20%) were using DMT after switching DMT at least once, 53 (12.5%) had ended DMT, and 108 (25.5%) had never started DMT. The risk of non-starting DMT was associated with increasing age at diagnosis, the region, disease-related stress and avoidant trauma coping. The risk factors for stopping therapy after the first prescribed DMT were adverse events and high education. CONCLUSIONS: Disease-related stress, avoidant trauma coping, age at diagnosis and education should be considered when motivating people with MS to use DMT. Hence, the challenges to starting and continuing treatment will probably also remain a problem with orally administered DMT.

Health-related quality of life and disease-modifying treatment behaviour in relapsing-remitting multiple sclerosis--a multicentre cohort study.

OBJECTIVES: To assess the overall health-related quality of life (HRQoL) in a population-based cohort of patients recently diagnosed with multiple sclerosis (MS) compared with the general Norwegian population, to compare HRQoL among MS patients continuing, switching, stopping or not starting disease-modifying treatment (DMT) and to assess the motivation for DMT according to HRQoL. MATERIALS AND METHODS: A multicentre retrospective survey completed by patients recently diagnosed with relapsing-remitting MS (relapsing-remitting multiple sclerosis, RRMS) during 2001-2007 at four university clinics in Norway was performed. HRQoL was measured by the SF-36 version 2 Health Survey and standardized according to the general population with a mean of 50 and a standard deviation of 10. Motivation for DMT was assessed using Visual Analogue Scale (VAS). RESULTS: The mean age at diagnosis was 37 years. Patients had reduced mean scores for all eight dimensions of the SF-36 with lowest scores on social functioning (mean = 31.1), mental health (mean = 32.7), general health (mean = 39.7) and vitality (mean = 40.9) compared with the general population. Continuers scored higher on mental summary scale (mean = 37.9) and lower on physical summary scale (mean = 43.8) compared with non-starters. Non-starters scored highest on physical summary scale (mean = 45.2, P = 0.007) and lowest on mental summary scale (36.1, P = 0.01) compared with continuers, stoppers and switchers. Patients with high SF-36 physical health summary score and low SF-36 mental health summary score were less motivated for using DMT. CONCLUSION: The association of HRQoL and motivation to DMT emphasizes the need for health care personnel to inform and motivate patients to DMT, especially among patients with low mental health and otherwise high physical health and functioning.