Ab0793 the Use of Natural Language Processing to Characterize Disease Burden: Sexual Distress in Sjögren’s Disease

Background: The challenges associated with living with a complex disease extend beyond the management of symptoms and treatments.¹ To comprehensively understand how a disease impacts patients' lives, it is necessary to listen to the experiences of patients and their communities. Sjögren's disease is a systemic autoimmune disease characterized by mucosal dryness, particularly of the eyes and mouth; pain; and fatigue. It is more common in women than in men. Although some work has highlighted the presence of sexual distress in Sjogren's disease,² there is a limited understanding of the symptomatology and emotional impacts associated with this issue. Objectives: We explored experiences with sexual difficulties that were shared in a social media community dedicated to Sjögren's disease. There were 2 objectives in the current study. The first aim was to identify the symptoms that are most associated with sexual distress, and the second was to illuminate the impact of those symptoms on patients' emotions and relationships. Methods: We analyzed conversations in a public subreddit, r/sjogrens, a social media community dedicated to Sjogren's, which included 70,000+ submissions/replies from 2012 to 2023. Conversations were explored using a natural language processing (NLP) engine trained to recognize and categorize clinical language on social media. Submissions/replies discussing sexual dysfunction were isolated for continued analysis in which terms in the categories "symptoms", "emotions", and "relationship status" were extracted from conversations. Odds ratios were calculated to identify the symptoms most associated with sexual dysfunction. Next, relationship status concepts were identified to understand the magnitude of impact on relationships. Finally, emotions were identified to explore how sexual dysfunction impacts mental and emotional health. A 1-proportion z-test was used to identify which emotions were significantly associated with sexual dysfunction (vs all Sjögren's conversations). Results: More than 200 submissions and replies from 160 authors were identified as relating to sexual dysfunction; for context, other burden-related concepts discussed with a similar frequency (~200 submissions/replies) included "insomnia/sleeplessness", "Raynaud's", and "sinus infections". The concepts most unique to sexual dysfunction conversations included "sex", "libido", "lube", and "vaginal dryness". The symptom most associated with sexual dysfunction was "vaginal dryness", followed by "discomfort", "pain", and "fatigue". Regarding relationships, approximately 27% of all sexual dysfunction submissions/replies mentioned a relationship (e.g., "husband", "spouse"). Emotions associated with sexual dysfunction conversations were mostly negative, with the strongest associations including proportionally higher mentions of "guilt", "embarrassment", and "disappointment". Conclusion: This work highlights the impact of Sjögren's disease in lived experiences and relationships as reported directly by the community. The results suggest that sexual distress may be influenced by both location-specific symptoms (e.g., vaginal dryness) as well as generalized symptoms (e.g., discomfort/pain/fatigue) associated with Sjogren's disease. Our findings reveal that a notable portion of sexual dysfunction conversations also mention a relationship and negative emotional affect (e.g., guilt), illuminating the potential adverse impact of sexual dysfunction on patients' emotions and their relationships. Future work should continue to explore the symptomatology and mental and emotional burden associated with sexual distress in Sjögren's disease. REFERENCES: [1] Sjögren's Foundation. Understanding Sjögren's. 2023. Accessed January 5, 2024. https://sjogrens.org/understanding-sjogrens [2] van Nimwegen JF, Arends S, van Zuiden GS, Vissink A, Kroese FGM, Bootsma H. The impact of primary Sjögren's syndrome on female sexual function. Rheumatology. 2015;54(7):1286-1293. doi:10.1093/rheumatology/keu522 Acknowledgements: NIL. Disclosure of Interests: 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, Chiara Baldini Yes (seminars, workshops), GSK, Sanofi, GSK, Sanofi, Novaritis, Yes: Sanofi, GSK, Aurinia, Amgen, Yes (clinical trials): GSK, Viela, Novaritis, Katy Antonopoulou BMS, Janssen, Horizon Therapeutics, Novartis, Servier, Androulla Phoka Charalambous Biogen, Boehringer Ingelheim, Galapagos, Horizon, Novartis, Pfizer, UCB, Annie Lau-Kilby AMGEN Inc, AMGEN Inc, Anthony J. Amatucci ACELYRIN, Inc., ACELYRIN, 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.