BACKGROUND Myasthenia gravis is a chronic, autoimmune, neuromuscular junction disorder characterized by skeletal muscle weakness. Current therapies for myasthenia gravis are associated with significant side effects. The objective of this study was to characterize the side effects, and associated health-related quality of life and treatment impacts, of traditional myasthenia gravis treatments. METHODS This study had two phases; a Phase 1 interview and a 2-part web-based survey in Phase 2 that included brainstorming (Step 1) and rating (Step 2) exercises using group concept mapping. In Phase 1, all 14 participants reported experiencing side effects from myasthenia gravis treatments which had significant impacts on daily life. In Phase 2, 246 participants contributed to Step 1; 158 returned for Step 2. RESULTS The brainstorming exercise produced 874 statements about side effects and their impact, which were reduced to 35 side effects and 23 impact-on-daily life statements. When rating these statements on severity, frequency, and tolerability, blood clots, infections/decreased immunity, weight gain, and diarrhea were the least tolerable and most severely rated. The most frequent and severe impacts were sleep interference and reduced physical and social activities. CONCLUSIONS Based on these findings, there appears to be a need for better and more tolerable treatments for myasthenia gravis patients.

中文翻译：

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了解重症肌无力的治疗副作用及其对日常生活的影响。

背景技术重症肌无力是一种慢性的，自身免疫性的神经肌肉接头疾病，其特征在于骨骼肌无力。重症肌无力的当前疗法与明显的副作用有关。这项研究的目的是表征传统重症肌无力治疗的副作用以及与健康相关的生活质量和治疗影响。方法本研究分为两个阶段。第1阶段的访谈和第2阶段的2部分基于网络的调查，其中包括使用小组概念图进行头脑风暴（第1步）和评分（第2步）练习。在第1阶段中，所有14名参与者均报告称重症肌无力治疗存在副作用，这对日常生活产生了重大影响。在第2阶段，有246位参与者参与了第1步；158返回到步骤2。结果集思广益练习产生了关于副作用及其影响的874项陈述，减少到35项副作用和23项对日常生活的影响陈述。在对这些陈述的严重性，频率和耐受性进行评级时，对血液凝块，感染/免疫力降低，体重增加和腹泻的耐受性最低，评级也最高。最频繁和严重的影响是睡眠干扰和减少的体育活动和社交活动。结论基于这些发现，似乎需要对重症肌无力患者进行更好，更耐受的治疗。体重增加和腹泻是最不能忍受的，并且评分最高。最频繁和严重的影响是睡眠干扰和减少的体育活动和社交活动。结论基于这些发现，似乎需要对重症肌无力患者进行更好，更耐受的治疗。体重增加和腹泻是最不能忍受的，并且评分最高。最频繁和严重的影响是睡眠干扰和减少的体育活动和社交活动。结论基于这些发现，似乎需要对重症肌无力患者进行更好，更耐受的治疗。