Subrata Ghosh1, Tom Sensky2, Francesc Casellas3, Louis-Charles Rioux4, Tariq Ahmad5, Juan R Márquez6, Tomas Vanasek7, Irina Gubonina8, Orhan Sezgin9, Sandro Ardizzone10, Kristina Kligys11, Joel Petersson11, Yasuo Suzuki12, Laurent Peyrin-Biroulet13. 1. NIHR Biomedical Research Center, University of Birmingham and Queen Elizabeth Hospital Birmingham, Birmingham, United Kingdom. 2. Imperial College London, London, United Kingdom. 3. Crohn-Colitis Care Unit [UACC], Hospital Universitari Vall d'Hebron, Barcelona, Spain. 4. Hôpital Maisonneuve-Rosemont, Montreal, Canada. 5. Royal Devon and Exeter National Health Service Foundation Trust, Exeter, United Kingdom. 6. Instituto de Coloproctologia ICO Clinica Las Americas, Medellin, Colombia. 7. University Hospital Hradec Králové, Hradec Králové, Czech Republic. 8. Military Medical Academy n.a. S.M.Kirov, "RIAT" Limited Liability Company, St. Petersburg, Russia. 9. Mersin University Faculty of Medicine, Mersin, Turkey. 10. ASST Fatebenefratelli Sacoo - Department of Biochemical and Clinical Sciences "L. Sacco", University of Milan, Milan, Italy. 11. AbbVie Inc., North Chicago, IL, United States. 12. Center of Inflammatory Bowel Disease, Toho University Sakura Medical Center, Sakura, Japan. 13. Nancy University Hospital, Inserm NGERE U1256, University of Lorraine, Nancy, France.
Abstract
BACKGROUND: The understanding the Impact of ulcerative COlitis aNd Its assoCiated disease burden on patients study [ICONIC] was a 2-year, global, prospective, observational study evaluating the cumulative burden of ulcerative colitis [UC] using the Pictorial Representation of Illness and Self-Measure [PRISM] tool that is validated to measure suffering, but not previously used in UC. METHODS: ICONIC enrolled unselected outpatient clinic attenders with recent-onset UC. Patient- and physician-reported outcomes including PRISM, the Short Inflammatory Bowel Disease Questionnaire [SIBDQ], the Patient Health Questionnaire [PHQ-9], and the Simple Clinical Colitis Activity Indexes [patient: P-SCCAI; physician: SCCAI] were collected at baseline and follow-up visits every 6 months. Correlations between these measures were assessed using Spearman's rank correlation coefficient. RESULTS: Overall, 1804 evaluable patients had ≥1 follow-up visit. Over 24 months, mean [SD] disease severity measured by P-SCCAI/SCCAI reduced significantly from 4.2 [3.6]/3.0 [3.0] to 2.4 [2.7]/1.3 [2.1] [p<0.0001]. Patient-/physician-assessed suffering, quantified by PRISM, reduced significantly over 24 months [p<0.0001]. SCCAI/P-SCCAI, and patient-/physician-assessed PRISM, showed strong pairwise correlations [rho ≥0.60, p<0.0001], although physicians consistently underestimated these disease severity and suffering measures compared with patients. Patient-assessed PRISM moderately correlated with other outcome measures, including SIBDQ, PHQ-9, P-SCCAI, and SCCAI (rho = ≤-0.38 [negative correlations] or ≥0.50 [positive correlations], p<0.0001). CONCLUSION: Over 2 years, disease burden and suffering, quantified by PRISM, improved in patients with relatively early UC. Physicians underestimated burden and suffering compared with patients. PRISM correlated with other measures of illness perception in patients with UC, supporting its use as an endpoint reflecting patient suffering.
BACKGROUND: The understanding the Impact of ulcerative COlitis aNd Its assoCiated disease burden on patients study [ICONIC] was a 2-year, global, prospective, observational study evaluating the cumulative burden of ulcerative colitis [UC] using the Pictorial Representation of Illness and Self-Measure [PRISM] tool that is validated to measure suffering, but not previously used in UC. METHODS: ICONIC enrolled unselected outpatient clinic attenders with recent-onset UC. Patient- and physician-reported outcomes including PRISM, the Short Inflammatory Bowel Disease Questionnaire [SIBDQ], the Patient Health Questionnaire [PHQ-9], and the Simple Clinical Colitis Activity Indexes [patient: P-SCCAI; physician: SCCAI] were collected at baseline and follow-up visits every 6 months. Correlations between these measures were assessed using Spearman's rank correlation coefficient. RESULTS: Overall, 1804 evaluable patients had ≥1 follow-up visit. Over 24 months, mean [SD] disease severity measured by P-SCCAI/SCCAI reduced significantly from 4.2 [3.6]/3.0 [3.0] to 2.4 [2.7]/1.3 [2.1] [p<0.0001]. Patient-/physician-assessed suffering, quantified by PRISM, reduced significantly over 24 months [p<0.0001]. SCCAI/P-SCCAI, and patient-/physician-assessed PRISM, showed strong pairwise correlations [rho ≥0.60, p<0.0001], although physicians consistently underestimated these disease severity and suffering measures compared with patients. Patient-assessed PRISM moderately correlated with other outcome measures, including SIBDQ, PHQ-9, P-SCCAI, and SCCAI (rho = ≤-0.38 [negative correlations] or ≥0.50 [positive correlations], p<0.0001). CONCLUSION: Over 2 years, disease burden and suffering, quantified by PRISM, improved in patients with relatively early UC. Physicians underestimated burden and suffering compared with patients. PRISM correlated with other measures of illness perception in patients with UC, supporting its use as an endpoint reflecting patient suffering.
Authors: Gerhard Schmalz; Henrike Kullmann; Stefan Büchi; Dirk Ziebolz; Tom Sensky; Deborah Kreher; Rainer Haak Journal: BMC Med Educ Date: 2022-07-29 Impact factor: 3.263