From Diagnosis to Satisfaction in Multiple Sclerosis: A Swiss Patient Survey Highlighting the Importance of the First Diagnostic Consultation

C. Kamm, Praveen Manjakunnel, Dirk Lehnick, M. Welter, A. Chan, N. Kamber, T. Vanbellingen
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Abstract

Background: An early treatment start with disease modifying therapies (DMT) and long-term adherence is crucial in the treatment of people with multiple sclerosis (PwMS) to prevent future disability. Objectives: To gain information on the diagnostic process, decision making, treatment start and adherence with regard to DMT as well as satisfaction in PwMS in Switzerland to optimize management of PwMS. Methods: A survey was conducted between June 2017 and March 2018 in six hospital-based MS centres and eight private practices in Switzerland. PwMS according to the 2010 McDonald criteria, aged 18–60 years, having a clinical isolated syndrome, relapsing remitting MS, or secondary progressive MS were eligible. The survey contained 40 questions, covering participants’ background and circumstances, treatment decisions, therapy start, treatment adherence, and satisfaction (EKNZ Req-2016-00701). Results: 212 questionnaires were returned for analysis. Of these, 125 (59.0%) were answered by patients treated by practice-based neurologists and 85 (40.1%) by patients treated in hospitals. That PwMS were satisfied overall with current medical care, that they were free of relapses and disease progression, and that they were able to live independently were the main goals of patients. Satisfaction was reflected by an early therapy start and a high adherence to DMT in our cohort. The treating neurologist played a major role in this regard. Furthermore, a satisfactory first diagnostic consultation (FDC) was crucial for successful long-term patient care positively influencing an early treatment start, longer duration of the initial therapy, as well as adherence to treatments and general satisfaction. Conclusion: The treating neurologist and especially a satisfactory FDC play a major role for the successful long-term treatment of PwMS. Detailed information on various aspects of the disease and time with the treating neurologist seems to be of major importance.
从多发性硬化症的诊断到满意度:一项瑞士患者调查强调了首次诊断咨询的重要性
背景:在多发性硬化症(PwMS)患者的治疗中,早期开始使用疾病修饰疗法(DMT)并长期坚持治疗是预防未来残疾的关键。目的:了解瑞士PwMS患者DMT的诊断过程、决策、治疗开始和依从性以及满意度,以优化PwMS的管理。方法:2017年6月至2018年3月期间,在瑞士的6家医院MS中心和8家私人诊所进行了一项调查。根据2010年McDonald标准,年龄18-60岁,具有临床孤立综合征,复发缓解型MS或继发进行性MS的PwMS符合条件。调查包含40个问题,包括参与者的背景和情况、治疗决定、治疗开始、治疗依从性和满意度(EKNZ Req-2016-00701)。结果:共回收问卷212份进行分析。其中,125个(59.0%)是由以实践为基础的神经科医生治疗的患者回答的,85个(40.1%)是由在医院治疗的患者回答的。PwMS对目前的医疗护理总体满意,没有复发和疾病进展,能够独立生活是患者的主要目标。在我们的队列中,早期治疗开始和对DMT的高依从性反映了满意度。治疗神经科医生在这方面发挥了主要作用。此外,令人满意的首次诊断咨询(FDC)对于成功的长期患者护理至关重要,对早期治疗开始、更长的初始治疗持续时间、治疗依从性和总体满意度产生积极影响。结论:神经科医师的治疗,特别是良好的FDC对长期治疗PwMS的成功起着重要作用。关于疾病的各个方面的详细信息和治疗神经科医生的时间似乎是非常重要的。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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