Donzé Cécile, Malapel Lucie, Kwiatkowski Arnaud, Lenne Bruno, Louchard Pierre, Neuville Véronique, Hautecoeur Patrick
Department of Physical Medicine and Rehabilitation, Saint Philibert Hospital, Lille Catholic Institute Hospital Group, France.
Neurology Department, Saint Vincent Hospital, Lille Catholic Institute Hospital Group, France.
Mult Scler J Exp Transl Clin. 2015 Aug 19;1:2055217315600720. doi: 10.1177/2055217315600720. eCollection 2015 Jan-Dec.
In multiple sclerosis (MS), treatment discontinuation leads to a higher risk of relapse, poorer quality of life and greater economic impact.
The objective of this work is to evaluate treatment discontinuation in MS, the reasons for this and the reasons for treatment resumption.
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.
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.
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.
在多发性硬化症（MS）中，停止治疗会导致更高的复发风险、更差的生活质量以及更大的经济影响。
本研究的目的是评估MS患者的治疗中断情况、其原因以及重新开始治疗的原因。
2011年5月至8月在法国开展了一项基于网络的全国性调查。共有602名MS患者回答了一份关于社会人口学数据、医疗随访、疾病修正疗法（DMTs）、对症治疗、所接受护理、治疗中断相关因素以及重新开始治疗原因的问卷。
在413名使用DMTs的患者中，54%曾考虑停止治疗，主要原因是愤怒（61%）、副作用（61%）和疲劳（57%）。68名患者实际上因副作用（43%）、未观察到疗效（32%）、恼怒（29%）或疲劳（29%）而停止了治疗。对症治疗中断的原因是害怕成瘾（32%-46%）和缺乏疗效（28%-45%）。物理治疗因疲劳（37%）、压力（34%）或无效（31%）而中断。据患者反映，心理支持、护理团队的同理心以及家人的支持本可预防治疗中断。
可预防治疗中断的主要因素是心理支持。在MS患者中启动和监测治疗会导致情绪和性格变化，需要做出调整以提高依从性。
