ArticleJournal of Crohn's & colitis2021
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.
Article in Journal of Crohn's & colitis, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.
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Who cites it
14 citing papers in PubMed, 24 citations in OpenAlex.
- Upadacitinib Treatment Improves Symptoms of Bowel Urgency and Abdominal Pain, and Correlates With Quality of Life Improvements in Patients With Moderate to Severe Ulcerative Colitis.Journal of Crohn's & colitis · 2021Trial
- The SCCAI and Mayo Endoscopic Severity Scores Are Positively Correlated with QIDS-SR16 Depression Scores in Patients with Ulcerative Colitis.Psychology research and behavior management · 2026Article
- A multi-country time and motion study to describe the experience and burden associated with the treatment of Fabry disease with enzyme replacement therapy with agalsidase alfa and agalsidase beta.Orphanet journal of rare diseases · 2025Observational
- Disease Burden and Unmet Medical Needs in Patients with Ulcerative Colitis in Greece: A Cross-Sectional Patient Survey.Medical sciences (Basel, Switzerland) · 2025Article
- Targeting Bile-Acid Metabolism: Nutritional and Microbial Approaches to Alleviate Ulcerative Colitis.Nutrients · 2025Review
- Exploring the molecular characteristics of inflammatory bowel disease from the perspective of hypoxia-related genes.Frontiers in pharmacology · 2025Article
- IBD-PODCAST Spain: A Close Look at Current Daily Clinical Practice in IBD Management.Digestive diseases and sciences · 2024Article
- Disease activity, burden and suffering in patients with ulcerative colitis in the UK cohort recruited into the global ICONIC study.Frontline gastroenterology · 2023Article
- Impact of adalimumab on disease burden in moderate-to-severe ulcerative colitis patients: The one-year, real-world UCanADA study.World journal of gastroenterology · 2022Observational
- Pilot study to evaluate a novel measure of self-perceived competencies among dental students.BMC medical education · 2022Article
- The Effects of Maintenance Therapy With Upadacitinib on Abdominal Pain, Bowel Urgency, and Fatigue in Patients With Moderately to Severely Active Ulcerative Colitis: Phase 3 U-ACHIEVE Maintenance Results.Gastroenterology & hepatology · 2022Article
- [Argentina and Chile Data Analysis from the ICONIC Observational Study].Acta gastroenterologica LatinoamericanaArticle
- Correlation between physician- and patient-directed disease assessments in ulcerative colitis patients from Saudi Arabia and Kuwait: Data from ICONIC.Saudi journal of gastroenterology : official journal of the Saudi Gastroenterology AssociationObservational
- The ulcerative colitis narrative Greece survey: patients' and physicians' perspective on quality of life and disease management.Annals of gastroenterologyArticle
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Authors and funding
14 authors at 13 institutions in 11 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe 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.
methodsICONIC 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.
resultsOverall, 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).
conclusionOver 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.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.