Department of Neurology, Duke University, Durham, North Carolina.
Department of Neurology, University at Buffalo Jacobs School of Medicine and Biomedical Sciences, State University of New York, Buffalo, New York.
Ann N Y Acad Sci. 2018 Jan;1412(1):95-101. doi: 10.1111/nyas.13537.
A task force of the Myasthenia Gravis Foundation of America recently published a formal consensus statement intended to be a treatment guide for clinicians caring for myasthenia gravis (MG) patients worldwide. Its development was stimulated by the fact that there is generally no accepted standard of care for MG, and no one treatment is best for all MG patients. Also, there are few randomized trials of treatments in current use, and the generalizability of the few trials that have been successful may be difficult. Fifteen international experts in MG participated in the consensus process, which used a simple consensus to develop preliminary definitions and the RAND/UCLA Appropriateness Method to quantify agreement on treatment guidance statements for seven topics: symptomatic and immunosuppressive treatment, intravenous immunoglobulin and plasma exchange, impending and manifest myasthenic crisis, thymectomy, juvenile MG, MG with muscle-specific tyrosine kinase antibodies, and MG in pregnancy. The executive summary of the guidance statement was published with open access to facilitate access by patients and healthcare professionals, and the full statement, with extensive background information, is available online. The guidance statement is a living document that will require updates as new treatments and new information on current treatments become available.
美国重症肌无力基金会的一个工作组最近发布了一份正式的共识声明,旨在为全球照顾重症肌无力 (MG) 患者的临床医生提供治疗指南。其制定的原因是,目前通常没有公认的 MG 护理标准,也没有一种治疗方法适合所有 MG 患者。此外,目前使用的治疗方法很少有随机试验,而且已经成功的少数试验的普遍性可能难以确定。15 名重症肌无力国际专家参与了共识制定过程,该过程使用简单共识来制定初步定义,并使用 RAND/UCLA 适宜性方法来量化对七个主题的治疗指导意见的一致性:症状和免疫抑制治疗、静脉注射免疫球蛋白和血浆置换、即将发生和明显的肌无力危象、胸腺切除术、青少年重症肌无力、肌肉特异性酪氨酸激酶抗体阳性的重症肌无力以及妊娠合并重症肌无力。该指导声明的执行摘要以开放获取的方式发布,以便患者和医疗保健专业人员能够获取,并在网上提供了附有大量背景信息的完整声明。该指导声明是一份具有生命力的文件,随着新的治疗方法和现有治疗方法的新信息的出现,将需要进行更新。