AB0794 USING SOCIAL MEDIA LISTENING TO CHARACTERIZE THE FLARE LEXICON IN PATIENTS WITH SJÖGREN’S DISEASE
Authors: M. Flurie, Z. Cline, C. Peter Bouillot, C. Baldini, L. J. Stone, B. Lamoreaux, A. Lau-Kilby, C. Defelice, M. Picone
Journal: Annals of the Rheumatic Diseases (2024)

<h3>Background:</h3> Sjögren's disease is a chronic, systemic autoimmune disorder characterized by lachrymal and salivary lymphocytic infiltration<sup>1-3</sup> that progresses to systemic manifestations involving other organs.<sup>1,3,4</sup> Sjögren's produces heterogenous symptoms of varying severity, intensity, and impact; some are common (eg, dry eyes/mouth, fatigue, pain), while others are specific to individuals (eg, migraine, nausea, vertigo).<sup>4-7</sup> Patients describe Sjögren's as being frustrating and unpredictable, varying from day to day (and from morning to afternoon), person to person, and over the life course.<sup>6,7</sup> Due to this heterogeneity, many aspects of Sjögren's remain incompletely understood by both patients and clinicians.<sup>6,8,9</sup> Sjögren's flares are temporary, acute exacerbations of disease activity, and are an inadequately evaluated aspect of the patient experience.<sup>6,10</sup> The failure to recognize disease activity due to flare may cause failure to treat and the potential for Sjögren's-related damage to accrue.<sup>11</sup> Discordance also exists between subjective patient symptoms of flare and clinical measures of disease activity, creating the potential for suboptimal care.<sup>9</sup> <h3>Objectives:</h3> To apply social media listening to characterize the flare lexicon within the Sjögren's community on the Reddit platform. <h3>Methods:</h3> This retrospective study downloaded documents (posts/comments) from October 16, 2012 to August 7, 2023 from the subreddit group, "r/Sjogrens." The flare lexicon was identified and analyzed using machine learning and natural language processing. This study examined the: 1) frequency of documents mentioning flare; 2) contexts in which flare was mentioned; 3) overarching clinical concepts associated with flare; 3) proportion of flare vs non-flare documents mentioning symptoms or clinical testing (compared using a two-proportion z-test); and 4) range of emotions expressed by flare authors. <h3>Results:</h3> The r/Sjögrens subreddit had 59,266 documents from 5,025 authors, primarily from the US, but also England, France, Germany, Ireland, the Netherlands, Norway, and others. Flare was mentioned in 4.4% of documents from 19.1% of authors. Symptoms mentioned more commonly than flare were pain (7.4%), eye dryness (6.5%), and xerostomia (5.8%). Flare was discussed as a <i>symptom</i> in 1,423 instances, a <i>disease</i> in 13 instances, or in no specific context in 1,890 instances. The overarching clinical concepts associated with flare included <i>symptoms</i> (symptoms, pain, fatigue, dryness of eye, xerostomia, arthralgia, stress), <i>body parts</i> (eye, mouth, joints, whole body), <i>medical professionals</i> (rheumatologist, physicians), and <i>medications</i> (prednisone, plaquenil [hydroxychloroquine]). After controlling for document length via stratification, a higher proportion of flare vs non-flare documents mentioned a <i>symptom</i>, whereas a lower proportion mentioned a <i>test (P</i>&lt;0.001 for both). Within flare documents, 36.5% of authors expressed an emotion, including fear (40.5% of primary emotions expressed), happiness (17.8%), sadness (15.7%), anger (15.5%), and disgust (7.3%). <h3>Conclusion:</h3> The Sjögren's community discusses flares frequently and in context with their symptoms (pain, dryness of the eyes and mouth, and fatigue), not clinical testing. Sjögren's flares also emotionally impact patients, with flare conversations frequently mentioning fear and other negative emotions. Additional research is required to more clearly define patient, physician, and caregiver/care partner parameters of Sjögren's flares, and better understand their clinical implications. <h3>REFERENCES:</h3> <b>NIL.</b> <h3>Acknowledgements:</h3> <b>NIL.</b> <h3>Disclosure of Interests:</h3> Maurice Flurie Yes Our clients are pharmaceutical and biotechnology companies including, but not limited to Horizon Therapeutics, Chiesi Global Rare Disease, Novartis, Harmony Biosciences, and Avadel, Zachary Cline Yes Our clients are pharmaceutical and biotechnology companies including, but not limited to Horizon Therapeutics, Chiesi Global Rare Disease, Novartis, Harmony Biosciences, and Avadel, Coralie Peter Bouillot: None declared, Chiara Baldini Yes (seminars, workshops), GSK, Sanofi, GSK, Sanofi, Novaritis, Yes: Sanofi, GSK, Aurinia, Amgen, Yes (clinical trials): GSK, Viela, Novaritis, Linda Jane Stone GSK, Novartis AG and Servier, Brian LaMoreaux AMGEN Inc, AMGEN Inc, Annie Lau-Kilby AMGEN Inc, AMGEN Inc, Christopher DeFelice Yes Our clients are pharmaceutical and biotechnology companies including, but not limited to Horizon Therapeutics, Chiesi Global Rare Disease, Novartis, Harmony Biosciences, and Avadel, Maria Picone Yes Our clients are pharmaceutical and biotechnology companies including, but not limited to Horizon Therapeutics, Chiesi Global Rare Disease, Novartis, Harmony Biosciences, and Avadel.