P157 Patient-reported disease activity in a large sample of ulcerative colitis patients using social media-delivered questionnaires

M.T. Abreu1, F. Cataldi2, K. Van Horn3, L.B. Herbert4, M. Fridman5, J. Setyawan6

1University of Miami Miller School of Medicine, Gastroenterology Division, Miami, United States, 2Arena Pharmaceuticals- Inc., Clinical Development, San Diego, United States, 3Health Union- LLC, Insights Division, Philadelphia, United States, 4Health Union- LLC, Research and Analytics Division, Philadelphia, United States, 5AMF Consulting, Statistics and Data Management, Los Angeles, United States, 6Arena Pharmaceuticals- Inc., Health economic and outcomes research, San Diego, United States


Medical therapy for inflammatory bowel disease (IBD) should have dual goals of improving symptoms and mucosal healing. Patient-reported outcomes (PROs) used for approval of ulcerative colitis (UC) treatments include number of bowel movements and bloody stools.[1] Recent research highlights the discordance between PROs and mucosal healing.[2] The aim of this analysis is to understand patient perspectives on UC symptoms and disease burden based on a cross-sectional survey of UC patients. We hypothesised that UC patients experience disease activity despite treatment and that current PROs fail to capture the full impact of disease activity on patients’ lives.


The IBD In America survey recruited patients via 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 categorised by disease activity based on number of flares and remission status during the past year.


Of 487 patients diagnosed with UC, mean age was 45.6 (SD 16.0); 85% were 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 the past month. Fatigue/low energy was most frequent complaint (86%) followed by urgency to move bowels (80%), abdominal pain/cramps (76%), joint pain/inflammation (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 it. Only 7% reported being in remission with no flares (past year) and no symptoms (past month).


Most UC patients experience frequent symptoms and flares while on treatment. The most common and bothersome symptoms are not taken into account in PROs nor addressed with current treatment. A more holistic approach to patient disease is needed.


Partial Mayo Scoring Index [2] Ma, C., Sandborn, W.J., D’Haens, G.R., Zou, G., Stitt, L.W., Singh, S., Ananthakrishnan, A.N., Dulai, P.S., Khanna, R., Jairath, V.l., & Feagan, B.G. (in press). Discordance between patient-reported outcomes and mucosal inflammation in patients with mild to moderate ulcerative colitis. Clinical Gastroenterology and Hepatology. doi: 10.1016/j.cgh.2019.09.021