补腺炎和Reddit:评估患者教育方面的差距
Vineeth R Vaidyula1, Samantha Ouellette2, Cooper Lathrop2
1School of Medicine, Icahn School of Medicine at Mount Sinai, New York, USA.
Cureus
|June 9, 2025
概括
患有补腺炎 (HS) 的患者经常在网上寻求有关疾病管理的信息. 非药物管理策略是Reddit上最常见的调查主题,强调需要改善患者教育.
科学领域:
- 皮肤病学 皮肤病学
- 医疗信息学 医疗信息学
- 患者报告的结果
背景情况:
- 补腺炎 (HS) 是一种慢性自身炎症性皮肤疾病,会严重损害生活质量.
- 由于疾病控制不足,HS患者经常在网上寻求支持和信息.
- 像Reddit这样的在线论坛可以作为了解患者教育需求的宝贵资源.
研究的目的:
- 分析患者在Reddit上产生的关于状腺炎的疑问.
- 确定患者关心的关键领域和HS教育中的潜在差距.
- 为医疗保健提供者提供有关HS管理的患者信息需求的信息.
主要方法:
- 在2021年10月14日至2022年1月30日期间,从"Hidradenitis" subreddit 中的帖子的网络扫描.
- 将650个提取的问题分类为预定义的主题 (例如症状,药物,管理).
- 对不同管理和疾病方面的问题频率进行定量分析.
主要成果:
- 在650个分析问题中,非药物管理是最常被问及的类别 (21.4%).
- 其他重要类别包括非特定管理 (19.5%) 和各种主题 (19.2%).
- 还分析了有关药物,症状,原因,触发因素和程序的问题.
结论:
- 关于HS亚分类的患者询问主要集中在疾病管理策略上.
- 显然需要加强患者教育,特别是关于HS的非药物治疗方法.
- 医疗保健提供者应该主动与HS患者讨论管理实践和产品,以弥合教育差距.
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