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.