Topics Analysis of Reddit and Twitter Posts Discussing Inflammatory Bowel Disease and Distress From 2017 to 2019

Background: Social media platforms are popular tools for people with inflammatory bowel disease (IBD) to seek support. In the current study, we sought to examine and characterize IBD and distress discourse on public social media platforms. Our goal was to identify topics associated with these online discussions. Methods: We collected public social media posts about IBD and distress from Reddit (N = 40 625) and Twitter (N = 40 306) published between September 2017 and August 2019. We created a term-based dictionary to characterize posts based on 8 different, nonmutually exclusive topics: (1) symptoms, (2) medication, (3) nutrition, (4) procedures, (5) marijuana, (6) stigma, (7) ostomy, and (8) intimacy. We used descriptive statistics to characterize the frequency and order the prevalence of the topics on the 2 platforms, and to assess topic co-occurrences among posts. Results: Most Reddit (79%) and Twitter (56%) posts mentioned at least 1 IBD topic. The order of topic prevalence was the same for the 2 platforms. Symptoms was the most mentioned topic (Reddit: 57%, Twitter 36%), followed by medication (Reddit: 30%, Twitter 11%), and nutrition (Reddit: 27%, Twitter 9%). Intimacy was the least mentioned topic (Reddit: 2%, Twitter: <1%). Topic co-occurrences varied by platform. Most Reddit posts (57%) mentioned at least 2 IBD topics, whereas only 27% of tweets mentioned multiple IBD topics. Conclusions: This study contributes to a growing literature examining how IBD is discussed on social media-specifically, in distress-related contexts on Reddit and Twitter. These cross-platform findings highlight important areas potentially associated with IBD-related distress, which could help facilitate future support. Lay Summary This study examined 2 big data sets of inflammatory bowel disease (IBD) and distress social media posts from Reddit and Twitter collected over a 2-year time period. Results showed that certain IBD topics, such as symptoms and medication, were prominent among these online discussions.