通过1401个社交媒体帖子探索动脉静脉形形患者的情绪
Avi A Gajjar1,2, Georgios S Sioutas1, Antonio Corral-Tarbay1
1Department of Neurosurgery, Hospital of the University of Pennsylvania, Penn Medicine, Philadelphia, PA, USA.
概括
患有动脉静脉形 (AVM) 的患者使用社交媒体提高认识,分享经验和联系. 妇女主要分享AVM信息,经常专注于恢复和科学解释.
科学领域:
- 医学 社交媒体 分析
- 患者报告的结果
- 关于罕见疾病的传播
背景情况:
- 社交媒体促进了罕见病患者的联系.
- 了解患者对动脉静脉形 (AVM) 的看法至关重要.
研究的目的:
- 分析患者在社交媒体上对动脉静脉形 (AVM) 的看法.
- 在AVM患者讨论中确定共同的主题和参与模式.
主要方法:
- 在Twitter,Instagram和TikTok上搜索患者的AVM经验.
- 不包括与患者无关的职位.
- 根据主题,参与和性别编码的帖子.
主要成果:
- 提高认识是最常见的主题 (87.0%).
- 症状重述 (50.2%),阳性 (17.5%) 和生存率 (8.3%) 也很普遍.
- 女性占据了大多数职位 (69.6%),更有可能讨论科学方面 (p=0.003).
结论:
- 社交媒体使全球患者能够连接,并为AVM等罕见疾病分享经验.
- 动脉动脉瘤患者利用社交平台向他人提供信息并建立社区.
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