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多发性硬化症(MS)的“治愈”-不同疾病阶段患者治疗目标的不断变化观点:波兰 MS 患者队列中的一项试点研究。

"Cure" for multiple sclerosis (MS)-Evolving views of therapy goals in patients on different stages of the disease: A pilot study in a cohort of Polish MS patients.

机构信息

Department of Hematology Oncology and Internal Diseases Medical University of Warsaw Warsaw Poland.

Department of Neurology Medical University of Warsaw Warsaw Poland.

出版信息

Brain Behav. 2017 May 2;7(6):e00701. doi: 10.1002/brb3.701. eCollection 2017 Jun.

Abstract

INTRODUCTION

New aggressive treatments promise improvement of results in the treatment of multiple sclerosis (MS), however, with high risk of serious complications. In this study, we analyzed patients' acceptance for risks connected with the MS treatment.

METHODS

The study was designed as a prospective nonanonymous online questionnaire. Responders were asked about the definition of the "cure" for MS and crucial goals in the treatment.

RESULTS

One hundred and eighty patients filled in the questionnaire (129 women and 51 men), and the mean age was 33 years ( = 10.29). The MS forms were as follows: relapsing-remitting (65%), secondary progressive (14%), primary progressive (10%), and other (11%), with mean EDSS score of 3 points ( = 2.6). For 50% of the patients, relief of symptoms such as fatigue (72%), paresis (66%), and balance disorders (65%) was synonymous with "cure." The patients with faster progression of the disease were likely to accept risky "curative" treatments-with average 68% accepted mortality risk ( = .003). Over 81% of patients accepted mortality rates over 1% for the treatment that achieves self-defined cure.

CONCLUSION

The study shows that the MS patients are likely to accept even very risky treatments as long as they promise patient-defined "cure."

摘要

简介

新的激进治疗方法有望改善多发性硬化症(MS)的治疗效果,但存在严重并发症的高风险。在这项研究中,我们分析了患者对与 MS 治疗相关风险的接受程度。

方法

该研究设计为前瞻性非匿名在线问卷。要求应答者定义 MS 的“治愈”标准和治疗的关键目标。

结果

180 名患者填写了问卷(129 名女性和 51 名男性),平均年龄为 33 岁(=10.29)。MS 形式如下:复发缓解型(65%)、继发进展型(14%)、原发进展型(10%)和其他型(11%),平均 EDSS 评分为 3 分(=2.6)。对于 50%的患者,缓解疲劳(72%)、瘫痪(66%)和平衡障碍(65%)等症状等同于“治愈”。疾病进展较快的患者更有可能接受风险较高的“治愈性”治疗——平均有 68%的患者接受死亡率风险(=0.003)。超过 81%的患者愿意接受治疗死亡率超过 1%,以达到自我定义的治愈。

结论

该研究表明,只要患者期望的是“治愈”,MS 患者就可能接受即使是非常危险的治疗。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/f150/5474707/d29dcf04935c/BRB3-7-e00701-g001.jpg

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