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Beyond clinical outcomes: a Reddit analysis of patient sentiment and experiences with sacroiliac joint dysfunction
Hailey B Hulse1, Reme Arhewoh2, Mudassir T Khan1
1University of Illinois College of Medicine Rockford, Rockford, IL, USA.
Background Context:
Sacroiliac (SI) joint dysfunction is a common cause of chronic low back and buttock pain, with SI joint fusion serving as a surgical intervention for patients who fail conservative management. While clinical studies provide patient-reported outcome measures (PROMs), real-world patient experiences, satisfaction, and complications remain underreported. Social media platforms are a vast database of patient narratives, and Reddit offers patients an anonymous support network.
Purpose:
To analyze sentiment and thematic trends in Reddit posts related to SI joint dysfunction and how patients engage with online communities to share experiences, navigate treatment decisions, and express concerns not captured by traditional outcome measures.
Study Design/Setting:
Retrospective, cross-sectional, mixed-methods study utilizing approximately 75,000 Reddit posts (2014-2024) across medical and patient-centered forums.
Patient Sample:
Total of 1,553 Reddit posts meeting inclusion criteria, identified from approximately 75,000 screened posts containing SI joint dysfunction-related keywords across the 10-year study period.
Outcome Measures:
Sentiment classification (positive/neutral vs negative) assessed via natural language processing, thematic categorization of posts, longitudinal trends in post volume, and associations between post characteristics and sentiment.
Methods:
Posts containing SI joint dysfunction-related keywords were identified and classified into 4 groups: surgery and related discussion, pain management, physical therapy and rehabilitation, and general discussion. Sentiment was assessed using natural language processing. Post characteristics such as length, date, and engagement metrics were also collected.
Results:
General discussion comprised 41.5% of posts, followed by pain management (21.7%), physical therapy and rehabilitation (19.1%), and surgery-related discussion (17.7%). Sentiment analysis classified 81.0% of posts as positive/neutral and 19.0% as negative. Surgery (24.7%) and pain management (25.8%) posts showed significantly higher negative sentiment, often reflecting frustration or unmet expectations. Longer posts showed significantly higher negative sentiment (36.5%) compared to medium-length posts. From 2020 to 2024, post volume rose substantially with a compound annual growth rate of 129%, reaching 749 new posts in 2024.
Conclusions:
To our knowledge, this is the first study to use social media to analyze real-world experiences of patients with SI joint dysfunction and those undergoing SI joint fusion. There is a meaningful portion of online discussion which express negative sentiment particularly in the surgery-related and pain management category. This highlights a potential gap between published outcomes and unmet patient expectation and provides an avenue for targeted intervention and further studies.
Level Of Evidence:
IV.