Disease activity, burden and suffering in patients with ulcerative colitis in the UK cohort recruited into the global ICONIC study

Objective The Understanding the Impact of Ulcerative Colitis and Its Associated Disease Burden on Patients (ICONIC) was a 2-year, global, prospective, observational study assessing disease burden in adults recently diagnosed (≤36 months) with ulcerative colitis (UC) receiving routine outpatient care, irrespective of disease severity or treatment. A subanalysis was conducted to understand the UK perspective. Design/method All eligible consenting patients enrolled in ICONIC from the UK were included in the subanalysis of patient-reported and physician-reported outcomes at baseline and year 2 (Y2). Results Sixty-three UK patients were included (mean age 43.4 years, 58.7% female). At baseline and Y2, the mean (±SD) Simple Clinical Colitis Activity Index (SCCAI) scores were 3.6 (±3.3) and 1.5 (±1.5); Patient Modified Simple Clinical Colitis Activity Index (P-SSCAI) were 4.9 (±4.0) and 2.6 (±2.6), respectively. Physician-reported Pictorial Representation of Illness and Self Measure (PRISM) median scores (assessing inverse of suffering) were 3.5 (IQR 2.0-6.8) at baseline and 5.5 (IQR 3.6-6.9) at Y2; patient-reported PRISM scores were 4.7 (IQR 2.6-6.9) and 5.4 (IQR 3.2-8.0), respectively. At baseline, SCCAI and P-SCCAI were strongly correlated (r=0.86, p<0.0001), and patient-reported and physician-reported PRISM scores moderately correlated (r=0.67, p<0.0001). At Y2, moderate correlations were observed (SCCAI vs P-SCCAI: r=0.72, p<0.0001; patient-reported vs physician- reported PRISM: r=0.60, p<0.0001). Rating Form of IBD Patient Concerns scores indicated patients' greatest concerns were with energy level, having an ostomy bag and effects of medication (baseline scores >3.0). Conclusions These findings demonstrated the multifaceted burden of disease in patients recently diagnosed with UC in the UK. Agreement between patients and physicians on disease activity/severity varied according to the instrument used.