S0780 Patient-Reported Disease Activity in a Large Sample of Ulcerative Colitis (UC) Patients Using Social Media-Delivered Questionnaires

Abstract

INTRODUCTION: Therapy for IBD should have dual goals of improving symptoms and mucosal healing. PROs used for approval of UC treatments include number of bowel movements and bloody stools. Research highlights discordance between PROs and mucosal healing. The aim of this cross-sectional survey of UC patients is to understand patient perspectives on UC symptoms and disease burden. We hypothesized that UC patients experience disease activity despite treatment and current PROs fail to capture the full impact of disease on patients' lives. METHODS: IBD In America survey recruited patients via InflammatoryBowelDisease.net and associated social platforms in 2019. Patients self-reported an IBD diagnosis, were 18+, lived in U.S., and participated without monetary incentive. Survey questions addressed diagnosis, symptoms, QoL, treatment, demographics, etc. Survey terms were based on how patients discuss UC in the IBD online community. Remission was defined as “significant reduction of symptoms without an actual cure.” Flare was defined as “temporary intensification of symptoms.” Patients were categorized by disease activity based on number of flares and remission status during the past year. RESULTS: Of 487 patients with UC, mean age 45.6 (SD 16.0); 85% female; 89% moderate to severe; 78% diagnosed in past 5 years; and 51% taking 5ASAs, 37% biologics/JAKs, and 23% immunomodulators. Despite treatment, 46% experienced 15+ symptom days in past month. Fatigue was most frequent complaint (86%) followed by urgency to move bowels (80%), abdominal pain (76%), joint pain (67%), and bloating (66%). Daily pain was experienced by 32%; even patients in remission with no flares experienced pain at least once a month (55%). Difficulty completing daily tasks was reported by 37%, and 27% felt their UC was not controlled despite efforts to manage. 7% reported being in remission (past year) and no symptoms (past month). CONCLUSION: Most UC patients experience frequent symptoms and flares while on treatment. The most common symptoms are not considered in PROs nor addressed with current treatment. A more holistic approach to patient disease is needed.