{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,8]],"date-time":"2026-07-08T08:02:19Z","timestamp":1783497739097,"version":"3.55.0"},"reference-count":31,"publisher":"Oxford University Press (OUP)","issue":"2","license":[{"start":{"date-parts":[[2020,7,28]],"date-time":"2020-07-28T00:00:00Z","timestamp":1595894400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/100006483","name":"AbbVie","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100006483","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2021,2,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Background<\/jats:title>\n                  <jats:p>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 has not previously been used in UC.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>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\u2019s rank correlation coefficient.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>Overall, 1804 evaluable patients had \u22651 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 &amp;lt;0.0001]. Patient-\/physician-assessed suffering, quantified by PRISM, reduced significantly over 24 months [p &amp;lt;0.0001]. P-SCCAI\/SCCAI and patient-\/physician-assessed PRISM showed strong pairwise correlations [rho \u22650.60, p &amp;lt;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 = \u2264-0.38 [negative correlations] or \u22650.50 [positive correlations], p &amp;lt;0.0001).<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusions<\/jats:title>\n                  <jats:p>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.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/ecco-jcc\/jjaa159","type":"journal-article","created":{"date-parts":[[2020,7,22]],"date-time":"2020-07-22T19:23:18Z","timestamp":1595445798000},"page":"228-237","source":"Crossref","is-referenced-by-count":20,"title":["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"],"prefix":"10.1093","volume":"15","author":[{"given":"Subrata","family":"Ghosh","sequence":"first","affiliation":[{"name":"NIHR Biomedical Research Centre, University of Birmingham and Queen Elizabeth Hospital Birmingham, Birmingham, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8063-1889","authenticated-orcid":false,"given":"Tom","family":"Sensky","sequence":"additional","affiliation":[{"name":"Faculty of Medicine, Department of Brain Sciences, Imperial College London, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Francesc","family":"Casellas","sequence":"additional","affiliation":[{"name":"Crohn-Colitis Care Unit [UACC], Hospital Universitari Vall d\u2019Hebron, Barcelona, Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Louis-Charles","family":"Rioux","sequence":"additional","affiliation":[{"name":"Service de Gastro-ent\u00e9rologie, H\u00f4pital Maisonneuve-Rosemont, Montreal, ON, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tariq","family":"Ahmad","sequence":"additional","affiliation":[{"name":"Gastrointestinal and Liver services, Royal Devon and Exeter National Health Service Foundation Trust, Exeter, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Juan R","family":"M\u00e1rquez","sequence":"additional","affiliation":[{"name":"Colorectal Surgery Department, Instituto de Coloproctologia ICO Clinica Las Americas, Medellin, Colombia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tomas","family":"Vanasek","sequence":"additional","affiliation":[{"name":"2nd Department of Internal Medicine-Gastroenterology, Charles University Faculty of Medicine and University Hospital Hradec Kr\u00e1lov\u00e9, Hradec Kr\u00e1lov\u00e9, Czech Republic"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Irina","family":"Gubonina","sequence":"additional","affiliation":[{"name":"Military Medical Academy n.a. S.M.Kirov, \u201cRIAT\u201d, St Petersburg, Russia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Orhan","family":"Sezgin","sequence":"additional","affiliation":[{"name":"Department of Gastroenterology, Mersin University Faculty of Medicine, Mersin, Turkey"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sandro","family":"Ardizzone","sequence":"additional","affiliation":[{"name":"ASST Fatebenefratelli Sacoo\u2014Department of Biochemical and Clinical Sciences \u201cL. Sacco\u201d, University of Milan, Milan, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kristina","family":"Kligys","sequence":"additional","affiliation":[{"name":"AbbVie Inc., North Chicago, IL, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joel","family":"Petersson","sequence":"additional","affiliation":[{"name":"AbbVie Inc., North Chicago, IL, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yasuo","family":"Suzuki","sequence":"additional","affiliation":[{"name":"Center of Inflammatory Bowel Disease, Toho University Sakura Medical Center, Sakura, Japan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laurent","family":"Peyrin-Biroulet","sequence":"additional","affiliation":[{"name":"Nancy University Hospital, Inserm NGERE U1256, University of Lorraine, Nancy, France"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2020,7,29]]},"reference":[{"key":"2021020110595762800_CIT0001","doi-asserted-by":"crossref","first-page":"1756","DOI":"10.1016\/S0140-6736(16)32126-2","article-title":"Ulcerative colitis","volume":"389","author":"Ungaro","year":"2017","journal-title":"Lancet"},{"key":"2021020110595762800_CIT0002","doi-asserted-by":"crossref","first-page":"25","DOI":"10.1186\/1477-7525-10-25","article-title":"Experiences of patients with chronic gastrointestinal conditions: in their own words","volume":"10","author":"McCormick","year":"2012","journal-title":"Health Qual Life Outcomes"},{"key":"2021020110595762800_CIT0003","doi-asserted-by":"crossref","first-page":"752","DOI":"10.1097\/MIB.0000000000000620","article-title":"Controversies revisited: a systematic review of the comorbidity of depression and anxiety with inflammatory bowel diseases","volume":"22","author":"Mikocka-Walus","year":"2016","journal-title":"Inflamm Bowel Dis"},{"key":"2021020110595762800_CIT0004","doi-asserted-by":"crossref","first-page":"430","DOI":"10.1053\/j.gastro.2016.10.036","article-title":"Etiology and treatment of pain and psychosocial issues in patients with inflammatory bowel diseases","volume":"152","author":"Regueiro","year":"2017","journal-title":"Gastroenterology"},{"key":"2021020110595762800_CIT0005","doi-asserted-by":"crossref","first-page":"600","DOI":"10.1093\/ecco-jcc\/jjy024","article-title":"Burden of ulcerative colitis on functioning and well-being: a systematic literature review of the SF-36\u00ae health survey","volume":"12","author":"Yarlas","year":"2018","journal-title":"J Crohns Colitis"},{"key":"2021020110595762800_CIT0006","doi-asserted-by":"crossref","first-page":"108","DOI":"10.1186\/1471-230X-12-108","article-title":"Perception gaps between patients with ulcerative colitis and healthcare professionals: an online survey","volume":"12","author":"Schreiber","year":"2012","journal-title":"BMC Gastroenterol"},{"key":"2021020110595762800_CIT0007","first-page":"529","article-title":"PRISM \u2013 pictorial representation of illness and self measure: the use of a simple non-verbal tool as a patient-centred outcome measure in early rheumatoid arthritis cohorts","volume":"76","author":"Taylor","year":"2017","journal-title":"Ann Rheum Dis"},{"key":"2021020110595762800_CIT0008","doi-asserted-by":"crossref","first-page":"368","DOI":"10.1191\/096120300678828479","article-title":"PRISM (pictorial representation of illness and self measure) - 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