P021 EMOTIONAL TOLL OF INFLAMMATORY BOWEL DISEASE: LESSONS FROM THE THEMATIC ANALYSIS OF ONLINE COMMUNITY FORUMS

Abstract

Patients with inflammatory bowel disease (IBD) are increasingly turning to online community forums (OCFs) to seek and share information, yet little is known about their userbase or content, which may dissuade providers from referring patients to OCFs. OCFs offer insight into patient priorities and their psychosocial well-being. We used topic modeling and sentiment analysis to examine sources of emotional distress and coping among IBD patients and their supporters on the largest IBD OCF, the Crohn’s & Colitis Foundation Community Forum. We analyzed 51,591 online posts and demographic data from 28,623 users from the Crohn’s & Colitis Foundation Community Forum generated from 1/22/08 to 11/17/17. We extracted self-reported demographic information and post content. We used ATLAS.ti® inductive analysis software to manually identify key themes, including emotions, in the 100 most popular posts of 2008, 2012, and 2016. Nine major emotion themes were observed and a word list of synonyms for each emotion was created. We used the word lists to extract all posts expressing each emotion theme and used latent Dirichlet allocation to perform thematic content analysis. We performed sentiment analysis using the TextBlog library for Python™. Sentiment is scored from -1, the most negative sentiment, to +1, the most positive sentiment. Among all registered users on the Crohn’s & Colitis Foundation Community Forum, 10,704 (34.4%) contributed at least one post and a subset of 1,455 (5.1%) users were at the 95th percentile of posting activity. All posts generated 2,541,240 views. Compared to less active users (who contributed at least one post), active users were younger (36.6 vs 38.4, p<0.0001), more likely to be female (78% vs 73.5%, p=0.0006), definitively diagnosed with IBD (92.9% vs 88%, p<0.0001), and diagnosed more recently (5.7 years vs 7.6, p<0.0001) (Table 1). Thematic analysis revealed 10,720 posts expressing at least one of 9 major emotion categories: Gratitude (40.0%), anxiety/fear (20.8%), empathy (18.2%), frustration/anger (13.4%), hope (13.2%), happiness (10.0%), depression/sadness (5.8%), shame/guilt (2.5%), and loneliness (2.5%). We identified the top three topics for each emotion (Figure 1). Posts expressing happiness, gratitude, or hope comprised the majority and were associated with more positive mean sentiment scores (0.33, 0.28, 0.12, respectively) compared to all posts on the forum (0.10, p<0.001). The majority of posts conveying an emotion on the Crohn’s & Colitis Foundation Community Forum were associated with positive sentiment. Posts expressing happiness, gratitude, or hope tended to convey positive messages on the importance of social support and gratitude towards other users in the online community. OCFs are an outlet for those affected by IBD to seek and provide advice in a supportive environment.Table 1Crohn’s & Colitis Foundation Community Forum user demographics from 2008 to 2017 Open table in a new tab