More than a gut feeling: large language model thematic analysis of social media posts from inflammatory bowel disease patient communities.

BACKGROUND

Inflammatory bowel disease (IBD) morbidity extends beyond gastrointestinal symptoms and complications. We aimed to describe IBD patient experience through an analysis of online patient communities.

METHODS

Thematic analysis of 104,123 posts from three IBD patient groups on the social media platform Reddit between 2015-2024 was undertaken using a large language model (LLM) based on the GPT-4 architecture. The Valence Aware Dictionary and Sentiment Reasoner (VADER) tool was used to assess sentiment analysis.

RESULTS

Of 15 core themes identified by LLM analysis, the most prevalent were 'Diagnosis struggles' (13.1%), 'Peer advice' (12.5%), and 'Mental health & Coping' (11.8%). Results were validated using a natural language processing model and human chart review, with concordance of 88.3% and 87.0%, respectively. The themes that generated the most community engagement were 'Relationships' (15.3 mean comments), 'Humor & Embarrassment' (12.8), and 'Hope & Remission' (12.6). 'Fatigue & Pain' was associated with the worst sentiment (-0.44), and 'Hope & Remission' with the best one (+0.43). Posts by self-identified females were more likely to focus on 'Mental Health & Coping' (11.7%vs 10.0%, p = 0.003), while self-identified males were more likely to post on 'Medication Experiences' (13.3%vs 11.7%, p = 0.003) and 'Surgery' (2.4%vs 1.7%, p = 0.003). Over the years, 'Surgery' posts decreased by 50%, while 'Fear of the Future' and 'Diagnosis Struggles' posts increased by 23% and 21%, respectively.

CONCLUSIONS

Patient posting and engagement focus on psychosocial and emotional disease burden, rather than on gastrointestinal morbidity. These results can inform healthcare professionals caring for patients with IBD.