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.

Ghosh, Subrata, Sensky, Tom, Casellas, Francesc, Rioux, Louis-Charles, Ahmad, Tariq, Márquez, Juan R, Vanasek, Tomas, Gubonina, Irina, Sezgin, Orhan, Ardizzone, Sandro, Kligys, Kristina, Petersson, Joel, Suzuki, Yasuo and Peyrin-Biroulet, Laurent (2020) 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. Journal of Crohn's & colitis. ISSN 1876-4479.

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Official URL: https://academic.oup.com/ecco-jcc/article/doi/10.1...

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.

Item Type: Article
Subjects: W Public health. Health statistics. Occupational health. Health education
WI Digestive system. Gastroenterology
Divisions: Clinical Support > Immunology
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Depositing User: Mrs Yolande Brookes
Date Deposited: 31 Jul 2020 15:31
Last Modified: 31 Jul 2020 15:31
URI: http://www.repository.uhblibrary.co.uk/id/eprint/3336

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