Myasthenia gravis (MG) is a rare, autoimmune, antibody-mediated, neuromuscular disease. This study analyzed digital conversations about MG to explore unprovoked perspectives. Advanced search, data extraction, and artificial intelligence-powered algorithms were used to harvest, mine, and structure public domain digital conversations about MG from US Internet Protocol addresses (August 2021 to August 2022). Thematic analyses examined topics, mindsets, and sentiments/key drivers via natural language processing and text analytics. Findings were described by sex/gender and treatment experience with steroids or intravenous immunoglobulin (IVIg). The 13,234 conversations were extracted from message boards (51%), social media networks (22%), topical sites (21%), and blogs (6%). Sex/gender was confirmed as female in 5703 and male in 2781 conversations, and treatment experience was with steroids in 3255 and IVIg in 2106 conversations. Topics focused on diagnosis (29%), living with MG (28%), symptoms (24%), and treatment (19%). Within 3176 conversations about symptoms, eye problems (21%), facial muscle problems (18%), and fatigue (18%) were most commonly described. Negative sentiments about MG were expressed in 59% of conversations, with only 2% considered positive. Negative conversations were dominated by themes of impact on life (29%), misdiagnosis problems (27%), treatment issues (24%), and symptom severity (20%). Impact on life was a key driver of negativity in conversations by both men (27%) and women (34%), and treatment issues was a dominant theme in conversations by steroid-treated (29%) and IVIg-treated (31%) patients. Of 1382 conversations discussing treatment barriers, 36% focused on side effects, 33% on lack of efficacy, 21% on misdiagnosis, and 10% on cost/insurance. Side effects formed the main barrier in conversations by both steroid-treated and IVIg-treated patients. Capturing the patient voice via digital conversations reveals a high degree of concern related to burden of disease, misdiagnosis, and common MG treatments among those with MG, pointing to a need for treatment options that can improve quality of life.

重症肌无力 (MG) 是一种罕见的自身免疫性抗体介导的神经肌肉疾病。这项研究分析了有关 MG 的数字对话，以探索无端的观点。使用高级搜索、数据提取和人工智能驱动的算法从美国互联网协议地址（2021 年 8 月至 2022 年 8 月）收集、挖掘和构建有关 MG 的公共领域数字对话。主题分析通过自然语言处理和文本分析检查主题、心态和情绪/关键驱动因素。研究结果按性别和类固醇或静脉注射免疫球蛋白 (IVIg) 治疗经验进行描述。 13,234 条对话是从留言板 (51%)、社交媒体网络 (22%)、主题网站 (21%) 和博客 (6%) 中提取的。性别/性别在 5703 次对话中被确认为女性，在 2781 次对话中被确认为男性，在 3255 次对话中确认为类固醇治疗经历，在 2106 次对话中确认为 IVIg 治疗经历。主题集中在诊断 (29%)、重症肌无力 (28%)、症状 (24%) 和治疗 (19%) 上。在 3176 次有关症状的对话中，最常描述的是眼部问题 (21%)、面部肌肉问题 (18%) 和疲劳 (18%)。 59% 的谈话中表达了对 MG 的负面情绪，只有 2% 的人表达了正面情绪。负面谈话的主题主要包括对生活的影响（29%）、误诊问题（27%）、治疗问题（24%）和症状严重程度（20%）。对生活的影响是男性 (27%) 和女性 (34%) 谈话中消极情绪的关键驱动因素，治疗问题是类固醇治疗 (29%) 和 IVIg 治疗 (31%) 谈话中的主导主题患者。在讨论治疗障碍的 1382 场对话中，36% 关注副作用，33% 关注缺乏疗效，21% 关注误诊，10% 关注费用/保险。副作用是类固醇治疗和 IVIg 治疗患者谈话中的主要障碍。通过数字对话捕捉患者的声音揭示了 MG 患者对疾病负担、误诊和常见 MG 治疗的高度关注，表明需要能够改善生活质量的治疗方案。