Centering Patient Voices in Lupus Pain: A Biopsychosocial Analysis of Reddit Narratives Using Large Language Models

Patients with chronic illness share their experiences in online communities and generate rich data on pain management. This study applied natural language processing methods, including large language models (LLMs), to Reddit discussions from lupus communities to characterize multidimensional pain experiences framed in the biopsychosocial model.

We extracted Reddit posts from the r/Lupus and r/LupusSupport subreddits posted from June 9, 2010, through December 31, 2023. Pain-related posts were identified using a clinically informed pain lexicon. Topic modeling was used to identify thematic patterns, which were then compared with structured summaries generated by LLM instructions that were fine-tuned using the biopsychosocial model of pain. Two reviewers conducted content analysis of the LLM-generated summaries, evaluating thematic accuracy and coverage.

Data from Reddit included 31,785 posts from 10,857 authors. We identified common pain complaints, management strategies, and sociocultural, affective, and nociplastic dimensions of pain. Instruction fine-tuned LLMs produced structured summaries with an average thematic accuracy score of 3.1 of 4 (kappa = .09) and content coverage score of 2.9 of 4 (kappa = .38). Sociocultural features presented in 123 posts (33.8%), including peer support and validation (n = 106) and provider interactions or access issues (n = 35). Nociplastic pain presented in 205 posts (56.3%).

Natural language processing methods can be used to extract rich, multidimensional insights into pain experiences from online communities focused on lupus. These approaches highlight the psychological, social, and cultural facets of pain that may be underrepresented in clinical settings, supporting more patient-centered approaches to care in rheumatology.