Abstract

Abstract Background Ulcerative colitis (UC) is a chronic inflammatory bowel disease (IBD), and the overall burden is increasing at the global level. Differences in perceptions of UC-related burden may highlight dramatic degree insufficient patient-physician communication. ICONIC is a prospective, non-interventional, observational study assessing disease burden in adults with UC using Pictorial Representation of Illness and Self Measure (PRISM). The local results of ICONIC study for Turkey are presented. Methods Patients aged ≥18 years with early UC (diagnosed ≤36 months) were enrolled. At baseline and every 6 months, patient and physician reported outcomes were collected using PRISM, the Simple Clinical Colitis Activity Index (SCCAI and P-SCCAI), The Rating Form of IBD Patients’ Concerns (RFIPC), the Short Inflammatory Bowel Disease Questionnaire (SIBDQ), and the Patient Health Questionnaire-9 (PHQ-9). Correlations between the patient assessed PRISM and other measurement tools were evaluated with Pearson correlation coefficient. Results One hundred and twenty patients were included (77 [64.2%] female; mean age 35.2 years). Physician-assessed disease severity was: severe 23 [19.2%], moderate 42 [35.0%], mild 40 [33.3%], in remission 15 [12.5%]. The mean ± SD physician- and patient-assessed PRISM scores were 4.8 ± 2.3 cm (range: 0.0–9.0) and 4.1 ± 2.6 cm (range: 0.0–8.5) at baseline and increased to 6.1 ± 2.3 cm (range: 0.1–8.5) and 5.5 ± 2.7 cm (range: 0.0–9.3) at the final visit, respectively, indicating an improvement in the perceived disease burden. The mean values of physician-SCCAI and P-SCCAI were 3.8 ± 3.5 and 5.5 ± 4.3 at baseline and decreased to 1.4 ± 2.5 and 2.7 ± 3.2 at the final visit, respectively, showing a decrease in disease activity. At baseline, the RFIPC and PHQ-9 values were 2.7 ± 1.7 and 8.0 ± 5.5 and decreased to 2.2 ± 2.0 and 5.2 ± 4.5 at the final visit, respectively. Patient-assessed SIBDQ was 43.8 ± 14.5 at baseline and increased to 54.0 ± 13.0 at the final visit. The strongest correlation of patient-assessed PRISM was with the physician-assessed PRISM (Spearman rho = 0.69, p<0.0001), followed by SCCAI (rho = -0.56, p<0.0001). Differences between physician- and patient-assessed PRISM scores were statistically significant (baseline: p=0.0010 vs. final visit: p=0.0206), highlighting an underestimation of patient’s suffering by physicians. Conclusion In the Turkish ICONIC sub-study, majority of patients on treatment showed improved outcomes during the follow-up period. A moderate correlation between patient-assessed PRISM and other measurement instruments represents that PRISM may be used as surrogate marker for patient suffering.

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