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

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

David T Rubin  1 , Joana Torres  2   3   4 , Iris Dotan  5   6 , Lan Terry Xu  7 , Irene Modesto  8 , John C Woolcott  9 , Sean Gardiner  8 , Bruce E Sands  10
Affiliations

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

David T Rubin et al. Inflamm Bowel Dis. .

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.

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Conflict of interest statement

D.T.R. has received consulting fees from AbbVie, Altrubio, Arena Pharmaceuticals, Bellatrix Pharmaceuticals, Boehringer Ingelheim Ltd, Bristol Myers Squibb, Celgene/Syneos, Connect BioPharma, GalenPharma/Atlantica, Genentech/Roche, Gilead Sciences, InDex Pharmaceuticals, Iterative Scopes, Janssen Pharmaceuticals, Lilly, Pfizer Inc, Prometheus Biosciences, Reistone, Takeda, and Techlab Inc; and research grants from Takeda. J.T. has received advisory board fees from AbbVie, Arena, Bristol Myers Squibb, Galapagos, Janssen, and Pfizer Inc; research grants from AbbVie and Janssen; and speaker fees from AbbVie, Galapagos, Janssen, and Pfizer Inc. I.D. has received consulting fees, research grants, or honoraria from Abbott, AbbVie, Altman, Arena, Athos, Cambridge Healthcare, Celgene/Bristol Myers Squibb, Celltrion, Falk Pharma, Ferring, Food Industries Organisation, Galapagos, Genentech/Roche, Gilead Sciences, GlaxoSmithKline, Harp Diagnostics, Iterative Scopes, Janssen Pharmaceuticals, Mediahuset, Medscape, Neopharm, PeerVoice, Pfizer Inc, Rafa Laboratories, Sandoz, Sangamo, Sublimity, Takeda, and Wilbio. L.T.X. is a former employee of Netbase Quid™, which was a paid contractor to Pfizer in connection with the development of the manuscript and related analysis. I.M., J.C.W., and S.G. are employees and shareholders of Pfizer Inc. B.E.S. has received research grants from Arena Pharmaceuticals, Bristol Myers Squibb, Janssen, and Theravance Biopharma R&D; has received personal fees from AbbVie, Abivax, Amgen, Arena Pharmaceuticals, AstraZeneca, Boehringer Ingelheim, Bristol Myers Squibb, Celltrion, Fresenius Kabi, Genentech, Gilead Sciences, GlaxoSmithKline, InDex Pharmaceuticals, Inotrem, Janssen, Johnson & Johnson, Kallyope, Lilly, Morphic Therapeutic, Pfizer Inc, Progenity, Prometheus Biosciences, Prometheus Laboratories, Protagonist Therapeutics, Sun Pharma, Surrozen, Takeda, TARGET RWE, Teva, Theravance Biopharma R&D, and Ventyx Biosciences; owns stock options in Ventyx Biosciences; and has received nonfinancial support from Janssen, Lilly, Pfizer Inc, and Takeda.

Figures

Figure 1.
Figure 1.
(A) The most frequently discussed themes in flare-related posts by patients with ulcerative colitis,a (B) the most frequently discussed flare-related topics by patients with ulcerative colitis,a and (C) the top 12 ranked flare-related topics discussed by patients with ulcerative colitis.b Flare-related posts, including those from the same author pre- and postflare, were identified from posts written by patients with ulcerative colitis on 8 online public forums in 6 different countries due to the inclusion of keywords. Data were then mapped semantically. aFlare-related post data were color-coded by themes and topics; each node represents a post, and connections represent similar language used across the posts. Centrally located nodes represent core concepts and peripheral nodes represent niche concepts. Percentages represent total volume of posts. bTop topic rankings are a result of a combined weighted score of volume (40%), unique authors (20%), negative sentiment (15%), betweenness centrality (15%), and recency (10%). cJoint pain and fatigue were analyzed together due to the proportion of posts that mentioned both symptoms (approximately 20% of the 2.4% of posts). C. difficile, Clostridioides difficile.
Figure 2.
Figure 2.
(A) Proportions of flare-related posts discussing treatment efficacy by the number of treatments discussed and (B) the drivers of treatment-switching decisions. Posts (N = 2156) are from patients who discussed flares and treatment switching on 8 online public forums in 6 different countries. aPosts were from patients who were seeking advice and asking for more information about whether they were making the right choice. bPosts were from patients who had decided to switch and were discussing pre- and postswitch experiences. HCP, healthcare professional; n, number of posts in each category; N, total number of posts.
Figure 3.
Figure 3.
The most frequently discussed themes in flare-related posts by patients with ulcerative colitis in the United States and Europe. Flare-related posts, including those from the same author pre- and postflare, were identified from posts written by patients with ulcerative colitis on 8 online public forums in 6 different countries due to the inclusion of keywords. Posts were stratified by region (United States and European countries [France, Germany, Italy, Spain, and the United Kingdom]) and discussion themes were identified and ordered by total volume of posts. NA, not applicable.
Figure 4.
Figure 4.
The most frequently discussed flare-related topics by patients with ulcerative colitis (A) in the United States and (B) in European countries. Flare-related posts, including those from the same author pre- and postflare, were identified from posts written by patients with ulcerative colitis on 8 online public forums in 6 different countries due to the inclusion of keywords. Posts were stratified by region (United States and European countries [France, Germany, Italy, Spain, and the United Kingdom]) and color-coded by topics; each node represents a post, and connections represent similar language used across the posts. Centrally located nodes represent core concepts and peripheral nodes represent niche concepts. Percentages represent total volume of posts.
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