The Digital Narrative: Chronic Pain Self-Management Insights from Reddit in Systemic Lupus Erythematosus

Chronic pain is a pervasive and complex symptom experienced by patients with Systemic Lupus Erythematosus (SLE), often impacting their quality of life. Traditional data sources, such as clinical records and surveys, provide valuable insights but may not fully capture the breadth of patient experiences and self-management strategies. This study leverages Reddit discussions as a real-world data source to explore chronic pain patterns, management approaches, and unmet needs among individuals with SLE. Utilizing natural language processing (NLP), we analyzed over 30,000 posts from r/Lupus and r/LupusSupport subreddits to identify key themes, trends, and alternative therapies discussed by users. This approach highlights the potential of social media as a complementary resource for understanding chronic pain and guiding patient-centered care interventions.

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Publication Details

Journal
Studies in health technology and informatics
Published
2025-04-08
DOI
https://doi.org/10.3233/shti250137
Citations
1
Primary Topic
Social Media in Health Education
Type
article
Field-Weighted Citation Impact
17.13
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article

The Digital Narrative: Chronic Pain Self-Management Insights from Reddit in Systemic Lupus Erythematosus

Andrew Walker, Titilola Falasinnu, Tricia Park, Selen Bozkurt et al.
1 citations
Studies in health technology and informatics
Social Media in Health Education
17.13
article

The Digital Narrative: Chronic Pain Self-Management Insights from Reddit in Systemic Lupus Erythematosus

Andrew Walker, Titilola Falasinnu, Tricia Park, Selen Bozkurt, Abeed Sarker, Nathan Le, Anushka Irani
article en
1 citations

Abstract

Chronic pain is a pervasive and complex symptom experienced by patients with Systemic Lupus Erythematosus (SLE), often impacting their quality of life. Traditional data sources, such as clinical records and surveys, provide valuable insights but may not fully capture the breadth of patient experiences and self-management strategies. This study leverages Reddit discussions as a real-world data source to explore chronic pain patterns, management approaches, and unmet needs among individuals with SLE. Utilizing natural language processing (NLP), we analyzed over 30,000 posts from r/Lupus and r/LupusSupport subreddits to identify key themes, trends, and alternative therapies discussed by users. This approach highlights the potential of social media as a complementary resource for understanding chronic pain and guiding patient-centered care interventions.

Studies in health technology and informaticsVol. 323
Emory University (US), Jacksonville College (US), Mayo Clinic in Florida (US), Stanford University (US)
Quality Education
Openalex Percentile: Top 3%
Social Media in Health Education
17.13
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