Arnaud Kwiatkowski

Social participation in patients with multiple sclerosis: correlations between disability and economic burden.

BackgroundEconomic costs related to treatment of multiple sclerosis (MS) must be justified by health state, quality of life (QOL) and social participation improvement. This study aims to describe correlations between social participation, economic costs, utility and MS-specific QOL in a sample of patients with MS (pwMS).MethodsWe interviewed 42 pwMS receiving natalizumab and collected clinical data, direct medical costs, productivity loss, utility (EQ5D-VAS), MS-specific QOL (SEP-59), social participation with the Impact on Participation and Autonomy questionnaire (IPA). We performed descriptive and correlation analyses.Results41 pwMS, with a mean Expanded Disability Status Scale (EDSS) score of 4.0, completed questionnaires. Mean annual global cost per patient was 68448 +/-33374 Euros and increased with EDSS (r = 0.644), utility (r = -0.456) and IPA (r = 0.519-0.671) worsening. Mean utility was 0.52 +/- 0.28. Correlations between IPA and QOL (EQ5D-VAS or SEP-59) were observed (r = -0.53 to -0.78). Association between QOL and EDSS was smaller (EQ5D-VAS) or absent. Productivity losses were poorly correlated to EDSS (r = 0.375).ConclusionModerate to strong correlations of social participation with clinical status (EDSS), QOL, utility and economic costs encourage exploring better these links in larger cohorts. The stronger correlation between social participation and QOL than between EDSS and QOL needs to be confirmed.

Treatment discontinuation in multiple sclerosis: The French Web-based survey ALLIANCE

Background In multiple sclerosis (MS), treatment discontinuation leads to a higher risk of relapse, poorer quality of life and greater economic impact. Objective The objective of this work is to evaluate treatment discontinuation in MS, the reasons for this and the reasons for treatment resumption. Methods A French national Web-based survey was carried out between May and August 2011. A total of 602 MS patients answered a questionnaire on sociodemographic data, medical follow-up, disease-modifying therapies (DMTs), symptomatic treatments, care given, factors involved in treatment discontinuation and reasons for resuming treatment. Results Among 413 patients using DMTs, 54% have considered discontinuing their treatment, primarily because of anger (61%), side effects (61%) and fatigue (57%). Sixty-eight patients have actually discontinued their treatment because of side effects (43%), lack of observed outcomes (32%), exasperation (29%) or fatigue (29%). The reasons for symptomatic treatment discontinuation were fear of addiction (32%–46%) and lack of efficacy (28%–45%). Physiotherapy was discontinued because of fatigue (37%), stress (34%) or inefficiency (31%). According to patients, treatment discontinuation could have been prevented by psychological support, care team empathy and support from family. Conclusion The major factor that could prevent treatment discontinuation is psychological support. Initiating and monitoring treatment in MS leads to emotional and personality changes, requiring adaptations that may improve compliance.