Clinics and research in hepatology and gastroenterology · 2026
More than a gut feeling: large language model thematic analysis of social media posts from inflammatory bowel disease patient communities.
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Cohen Roy Tal, Tov Elad Yom, Shepshelovich Daniel
Аннотация
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.
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.