P135 Disease-related Worries and Concerns in UK Patients with Ulcerative Colitis: 2-Year Data from ICONIC

Background ICONIC is the largest ongoing, prospective, multi-country observational study assessing cumulative disease-associated burden in adults with ulcerative colitis (UC) under routine care. This local subanalysis evaluated patient worries and concerns up to 2 years in UK patients using the Rating Form of inflammatory bowel disease (IBD) Patient Concerns (RFIPC) questionnaire. Methods Adults with early UC (diagnosed ≤36 months) were enrolled irrespective of treatment regimen or disease severity. Patients completed RFIPC, a 25-item questionnaire comprising frequently reported worries/concerns of IBD patients, at each visit (6-month intervals). Responses are scored on a 10-cm visual analogue scale for each individual question from 0 (no concerns) to 10 (a great deal). The mean of all 25 items represents the total score (lower scores indicate less worries/concerns). In this analysis, data are reported for UK patients as observed using descriptive statistics at baseline (BL, visit 1 [V1]), 1 year (V3), and 2 years (V5). Patients were stratified by physician-assessed disease severity (mild, moderate, severe, in remission) at baseline. Results Sixty-three UK patients were included (37 [59%] female; mean ± SD age 43.4 ± 15.7 years; median [interquartile range] time since UC diagnosis 126 (59 to 260) days; physician-assessed UC severity: mild 18 [29%], moderate 18 [29%], severe 11 [17%], in remission 16 [25%]). Mean ± SD total RFIPC scores for all patients were 2.9 ± 2.3 (n = 63) at V1, 2.7 ± 2.5 (n = 40) at V3, and 2.2 ± 2.0 (n = 35) at V5. At BL, mean ± SD RFIPC total scores by physician-assessed disease severity at BL were: mild 3.2 (1.9); moderate 2.6 (2.6); severe 4.8 (2.4); in remission 1.8 (1.7). The changes from BL to 2 years, stratified by physician-assessed disease severity at BL, were: mild −1.2 (1.4); moderate −0.7 (1.7); severe −2.2 (2.7); in remission −0.2 (1.0). The disease-related-specific concerns with the highest mean total RFIPC scores (i.e. scores >4.0) for all patients at BL were ‘energy level’, ‘having an ostomy bag’ and ‘effects of medication’. Mean total RFIPC scores for these specific concerns decreased between V1 and V5 for all patients. Of 5 UK sites, all had established multi-disciplinary teams (MDTs) and four had a psychologist in situ. Conclusion Despite all UK centres having MDTs and most having a psychologist in situ, this subanalysis from ICONIC demonstrated a high burden of worries and concerns in early UC patients with more severe disease. These concerns were most notable at BL, and appeared to decrease over time. The greatest concerns were with the treatment and complications of the disease; this included concerns about energy levels, highlighting that fatigue remains an unmet need for UC patients.