A Global, Prospective, Observational Study Measuring Disease Burden and Suffering in Patients With Ulcerative Colitis, Using the Pictorial Representation of Illness and Self-measure Tool
Year: 2020
Type: article
Study design: Observational Study
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.
Source: Journal of Crohn s and Colitis
Institutions: Queen Elizabeth Hospital Birmingham, NIHR Birmingham Biomedical Research Centre, University of Birmingham, Imperial College London, Vall d'Hebron Hospital Universitari, Hôpital Maisonneuve-Rosemont, Royal Devon & Exeter NHS Foundation Trust, Charles University, University Hospital Hradec Králové, S. M. Kirov Military Medical Academy, Mersin Üniversitesi, University of Milan, ASST Fatebenefratelli Sacco, AbbVie (United States), Toho University, Toho University Medical Center Sakura Hospital, Inserm, Centre Hospitalier Régional et Universitaire de Nancy, Nutrition-Génétique et Exposition aux Risques Environnementaux, Université de Lorraine
Language: English
Topic: Inflammatory Bowel Disease
Subfield: Gastroenterology
Field: Medicine
Domain: Health Sciences
Open Access status: hybrid
Estimated APC paid: $4,790
Funder: AbbVie
OpenAlex ID: W3045870764