Maurice Flurie1, Monica Converse1, Christopher Parker2, Brian LaMoreaux3, Daniel Hernandez4, N. Lawrence Edwards5, Gary Ho1, Kristina Davidson6, E. Robert Wassman1, Christopher DeFelice1 and Maria Picone1, 1TREND Community, Philadelphia, PA, 2TREND Community, Austin, TX, 3Horizon Therapeutics, Deerfield, IL, 4Global Healthy Living Foundation, St. Johns, FL, 5University of Florida College of Medicine, Gainesville, FL, 6Horizon Therapeutics, Dublin, Ireland
Background/Purpose: To comprehensively understand the impact of disease management strategies, it is essential to understand the patient perspective. Gout is a chronic inflammatory arthritis characterized by painful joint flare-ups secondary to uric acid accumulation. Virtually all subspecialty groups recommend a proactive "treat-to-target" strategy to reduce serum urate levels, but many individuals living with gout adhere to a "treat-to-no symptoms" strategy. Here, we aimed to characterize gout community perspectives on various management approaches to gout care.
Methods: We evaluated 2 online social media communities using a proprietary analytics engine that evaluates social media conversations using natural language processing. Sources included a private Facebook group, The Gout Support Group of America (15,000+ members), which had 50,000 posts/comments from 2021 to 2023; and a public subreddit, r/gout (9,000+ members), with 125,000 posts/comments from 2011 to 2023. The engine used a topic modeling approach to identify the most frequent conversation themes across groups. Topics related to disease management were then tagged. All management topics were subject to sentiment analysis in which posts/comments were scored from −1 (most negative) to 1 (most positive) using a pretrained sentiment tagger. A final exploratory analysis identified the number of questions in each topic.
Results: Topic modeling yielded more than 30 topics that had at least 300 total posts/comments. Fourteen topics related to disease management (others related to disease burden, etc.). Polarity analysis showed the most positive management topics, in rank order, to be uric acid monitoring, weight loss, cbd/thc, allopurinol, and prednisone. Statistically significant differences were found between topic polarities as determined by 1-way ANOVA [F(4,10543) = 16.74, P = .0001]. A Tukey post hoc test revealed that uric acid monitoring conversation polarity was significantly higher [0.15 (0.24), P = .008] than cbd/thc conversations, as well as allopurinol and prednisone conversations but not weight loss conversations. Exploratory analysis showed that about 40% of all posts/comments in diseasemanagement topics included questions, compared with 20% in disease burden topics.
Conclusion: Using a proprietary analytics engine, we identified the most prevalent topics of conversation across 2 online gout communities. In comparing the top 5 most positive management topics, uric acid monitoring achieved the highest mean sentiment. Though the functional impact of sentiment differences is not easily appraised, these contrasts could suggest that gout community members tend to prefer uric acid monitoring over reactive management approaches such as prednisone. Disease management topics were composed of about 40% questions (vs 20% for disease burden topics), suggesting that increased awareness of various management strategies could benefit community members. Further work is needed to continue investigation of the patient perspective on gout management, which could be an important factor for patients having greater autonomy and participation in controlling their disease.
M. Flurie: TREND Community, 3, 12, Shareholder; M. Converse: TREND Community, 3, 12, Shareholder; C. Parker: Gout Support Group of America, 6, 12, Co-founder; B. LaMoreaux: Horizon Therapeutics, 3, 12, Stockholder; D. Hernandez: Global Healthy Living Foundation, 3; N. Edwards: Horizon Therapeutics, 2, United Rheumatology, 12, Medical Policy Committee Member; G. Ho: Gout Support Group of America, 1, 5, 8, 12, Grant funded from Horizon Therapeutics, plc, TREND Community, 3, 12, Shareholder; K. Davidson: Horizon Therapeutics, 3, 12, Stockholder; E. Wassman: TREND Community, 3, 12, Shareholder; C. DeFelice: TREND Community, 3, 12, Shareholder; M. Picone: TREND Community, 3, 12, Shareholder.
