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

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.

Keywords: flare; natural language processing; online forum; ulcerative colitis.

Plain language summary

The patient-reported triggers of flares that were most frequently discussed in online forum posts are not routinely monitored during ulcerative colitis management, emphasizing the need for physicians to incorporate a broader, more holistic approach to ulcerative colitis management than currently practiced.

MeSH terms

  • Adult
  • Colitis, Ulcerative* / psychology
  • Colitis, Ulcerative* / therapy
  • Female
  • Humans
  • Male
  • Mesalamine / therapeutic use
  • Social Media*
  • Symptom Flare Up*

Substances

  • Mesalamine

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