Lupus & antiphospholipid syndrome
Centering Patient Voices in Lupus Pain: A Biopsychosocial Analysis of Reddit Narratives Using Large Language Models
Authors' conclusion
Natural language processing methods can be used to extract rich, multidimensional insights into pain experiences from online communities focused on lupus.
Study context
- Population
- Reddit posts from the r/Lupus and r/LupusSupport subreddits, June 9, 2010, through December 31, 2023; pain-related posts identified by a clinically informed pain lexiconposts from 10,857 authors
- Participants
- 31,785 participants
- Outcome
- Pain experiences in lupus Reddit narratives (biopsychosocial model)
Methodological detailsnatural language processing, topic modeling, instruction fine-tuned large language models (LLMs), content analysis by two reviewers
- Natural language processing
- Topic modeling
- Instruction fine-tuned LLMs
- Content analysis by two reviewers
Main finding
As reported in the abstract
- LLM summaries, average thematic accuracy score (of 4)
- 3.1
- Thematic accuracy, kappa
- .09
- LLM summaries, content coverage score (of 4)
- 2.9
- Content coverage, kappa
- .38
- Posts with sociocultural features
- 123 (33.8%)
- Sociocultural: peer support and validation, n
- 106
- Sociocultural: provider interactions or access issues, n
- 35
- Posts with nociplastic pain
- 205 (56.3%)
Observational data: associations, not effects.
Original publication
Centering Patient Voices in Lupus Pain: A Biopsychosocial Analysis of Reddit Narratives Using Large Language Models. Arthritis Care Res (Hoboken). Published 11 November 2025. doi:10.
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