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通过分析在线公共论坛帖子洞察溃疡性结肠炎发作患者的观点。

An Insight into Patients' Perspectives of Ulcerative Colitis Flares via Analysis of Online Public Forum Posts.

机构信息

Inflammatory Bowel Disease Center, University of Chicago Medicine, Chicago, IL, USA.

Gastroenterology Division, Hospital Beatriz Ângelo, Loures, Portugal.

出版信息

Inflamm Bowel Dis. 2024 Oct 3;30(10):1748-1758. doi: 10.1093/ibd/izad247.

Abstract

BACKGROUND

The knowledge of patients' perceptions of factors contributing to ulcerative colitis (UC) flares is limited; however, online patient communications could offer insight. This analysis aimed to identify the most frequent patient-reported triggers and symptoms of UC flares, which could highlight potential interventions for outcome improvement.

METHODS

Online posts written pre- and postflare by patients with UC on 8 public forums in 6 countries between January 1, 2019, and February 14, 2021, were identified using flare-related keywords. Flare-related posts were captured and Netbase Quid™ artificial intelligence text analytics and natural language processing software were used to semantically map and identify commonly discussed themes and topics (subsets of themes).

RESULTS

Of >27 000 patient posts, 12 900 were identified as flare related. The most frequent themes were treatment experiences and side effects (28.5% of posts), followed by flare symptoms (22.9% of posts). The most frequent topic was emotional/peer support (9.4% of posts), followed by experiences with mesalamine (and other oral/rectal formulations; 8.0% of posts), and dietary recommendations (6.0% of posts). Stress and anxiety were the most frequently reported flare triggers (37.9% of posts), followed by diet (28.4% of posts). Stress and anxiety were frequently identified as both triggers for, and general symptoms of, flare. Blood in the stool was the most discussed flare indicator (57.8% of posts).

CONCLUSIONS

Frequently discussed patient-perceived triggers of UC flares included diet, stress, and anxiety. These results suggest that physicians could incorporate a broader and more holistic approach to UC monitoring and management than is currently practiced.

摘要

背景

患者对溃疡性结肠炎(UC)发作相关因素的认知有限;然而,在线患者交流可能提供一些见解。本分析旨在确定患者报告的 UC 发作最常见的诱因和症状,这可能突出潜在的干预措施以改善结局。

方法

使用与 flare 相关的关键词,从 2019 年 1 月 1 日至 2021 年 2 月 14 日期间在 6 个国家的 8 个公共论坛上,识别出患者在 UC 发作前和发作后发布的在线帖子。捕获 flare 相关帖子,并使用 Netbase Quid™人工智能文本分析和自然语言处理软件进行语义映射和识别常见讨论主题和话题(主题子集)。

结果

在超过 27000 个患者帖子中,有 12900 个被确定为 flare 相关。最常见的主题是治疗经验和副作用(28.5%的帖子),其次是 flare 症状(22.9%的帖子)。最常见的话题是情绪/同伴支持(9.4%的帖子),其次是 mesalamine(和其他口服/直肠制剂)的经验(8.0%的帖子),以及饮食建议(6.0%的帖子)。压力和焦虑是最常报告的 flare 诱因(37.9%的帖子),其次是饮食(28.4%的帖子)。压力和焦虑常被认为是 flare 的诱因和一般症状。粪便中的血液是最常讨论的 flare 指标(57.8%的帖子)。

结论

频繁讨论的 UC 发作患者感知诱因包括饮食、压力和焦虑。这些结果表明,与当前实践相比,医生可以采用更广泛和更全面的方法来监测和管理 UC。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3197/11447010/d3ee23105e82/izad247_fig1.jpg

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