{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,30]],"date-time":"2026-10-30T00:12:34Z","timestamp":1793319154694,"version":"4.5.0"},"reference-count":70,"publisher":"Oxford University Press (OUP)","issue":"4","funder":[{"name":"Oxford Academic Health Science Network"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2018,3,28]]},"DOI":"10.1093\/ecco-jcc\/jjx161","type":"journal-article","created":{"date-parts":[[2017,11,23]],"date-time":"2017-11-23T20:16:06Z","timestamp":1511468166000},"page":"408-418","source":"Crossref","is-referenced-by-count":128,"title":["Developing a Standard Set of Patient-Centred Outcomes for Inflammatory Bowel Disease\u2014an International, Cross-disciplinary Consensus"],"prefix":"10.1093","volume":"12","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0044-0212","authenticated-orcid":false,"given":"Andrew H","family":"Kim","sequence":"first","affiliation":[{"name":"Translational Gastroenterology Unit, John Radcliffe Hospital, Oxford, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charlotte","family":"Roberts","sequence":"additional","affiliation":[{"name":"International Consortium for Health Outcomes Measurement, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brian G","family":"Feagan","sequence":"additional","affiliation":[{"name":"Department of Medicine, University of Western Ontario, London, Ontario, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rupa","family":"Banerjee","sequence":"additional","affiliation":[{"name":"Asian Institute of Gastroenterology, Hyderabad, India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Willem","family":"Bemelman","sequence":"additional","affiliation":[{"name":"Department of Surgery, Academic Medical Center, Amsterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Keith","family":"Bodger","sequence":"additional","affiliation":[{"name":"Department of Biostatistics, Institute of Translational Medicine, University of Liverpool, Liverpool, UK"},{"name":"Digestive Diseases Unit, Aintree University Hospital, Liverpool, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marc","family":"Derieppe","sequence":"additional","affiliation":[{"name":"Association Fran\u00e7ois Aupetit, France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Axel","family":"Dignass","sequence":"additional","affiliation":[{"name":"Department of Medicine I, Agaplesion Markus Hospital, Goethe-University, Frankfurt am Main, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Richard","family":"Driscoll","sequence":"additional","affiliation":[{"name":"Health Quality Improvement Partnership, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ray","family":"Fitzpatrick","sequence":"additional","affiliation":[{"name":"University of Oxford, Oxford, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Janette","family":"Gaarentstroom-Lunt","sequence":"additional","affiliation":[{"name":"Department of Gastroenterology and Hepatology, University Medical Center Utrecht, Utrecht, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Peter D","family":"Higgins","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine, University of Michigan Medical School, Michigan, Ann Arbor, MI, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paulo Gustavo","family":"Kotze","sequence":"additional","affiliation":[{"name":"Catholic University of Parana, Curitiba, Brazil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jillian","family":"Meissner","sequence":"additional","affiliation":[{"name":"Crohn\u2019s and Colitis Foundation of America"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marian","family":"O\u2019Connor","sequence":"additional","affiliation":[{"name":"St Mark\u2019s Hospital, London Northwest Healthcare NHS Trust, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Zhi-Hua","family":"Ran","sequence":"additional","affiliation":[{"name":"Key Laboratory of Gastroenterology & Hepatology Ministry of Health, Division of Gastroenterology and Hepatology, Ren Ji Hospital, School of Medicine, Shanghai Jiao Tong University, Shanghai Institute of Digestive Disease, Shanghai Inflammatory Bowel Disease Research Center, Shanghai, China"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Corey A","family":"Siegel","sequence":"additional","affiliation":[{"name":"Department of Gastroenterology, Dartmouth\u2013Hitchcock Medical Center, Lebanon, New Hampshire, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Helen","family":"Terry","sequence":"additional","affiliation":[{"name":"Crohn\u2019s and Colitis UK, St Albans, Hertfordshire, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Welmoed K","family":"van Deen","sequence":"additional","affiliation":[{"name":"UCLA Center for Inflammatory Bowel Diseases, Division of Digestive Diseases, David Geffen School of Medicine, University of California, Los Angeles, CA, USA"},{"name":"USC Gehr Family Center for Implementation Science, Los Angeles, CA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"C Janneke","family":"van der Woude","sequence":"additional","affiliation":[{"name":"Erasmus University Medical Centre, Erasmus University, Rotterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alandra","family":"Weaver","sequence":"additional","affiliation":[{"name":"Crohn\u2019s and Colitis Foundation of America, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Suk-Kyun","family":"Yang","sequence":"additional","affiliation":[{"name":"Department of Gastroenterology, University of Ulsan College of Medicine, Asan Medical Center, Seoul, Republic of Korea"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bruce E","family":"Sands","sequence":"additional","affiliation":[{"name":"Icahn School of Medicine at Mount Sinai, New York, NY, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"S\u00e9verine","family":"Vermeire","sequence":"additional","affiliation":[{"name":"Department of Gastroenterology & Hepatology, University Hospitals Leuven, Leuven, Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Simon PL","family":"Travis","sequence":"additional","affiliation":[{"name":"Translational Gastroenterology Unit, John Radcliffe Hospital, Oxford, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2017,12,5]]},"reference":[{"key":"key\n\t\t\t\t20180328065328_CIT0001","doi-asserted-by":"crossref","first-page":"220","DOI":"10.1377\/hlthaff.2011.0762","article-title":"Use of 13 disease registries in 5 countries demonstrates the potential to use outcome data to improve health care\u2019s value","volume":"31","author":"Larsson","year":"2012","journal-title":"Health Aff"},{"key":"key\n\t\t\t\t20180328065328_CIT0002","doi-asserted-by":"crossref","first-page":"503","DOI":"10.1097\/SLA.0b013e31818a43af","article-title":"Value-based health care delivery","volume":"248","author":"Porter","year":"2008","journal-title":"Ann Surg"},{"key":"key\n\t\t\t\t20180328065328_CIT0003","doi-asserted-by":"crossref","first-page":"109","DOI":"10.1056\/NEJMp0904131","article-title":"A strategy for health care reform\u2014toward a value-based system","volume":"361","author":"Porter","year":"2009","journal-title":"N Engl J Med"},{"key":"key\n\t\t\t\t20180328065328_CIT0004","first-page":"64","article-title":"Redefining competition in health care","volume":"82","author":"Porter","year":"2004","journal-title":"Harv Bus Rev"},{"key":"key\n\t\t\t\t20180328065328_CIT0005","doi-asserted-by":"crossref","first-page":"2477","DOI":"10.1056\/NEJMp1011024","article-title":"What is value in health care","volume":"363","author":"Porter","year":"2010","journal-title":"N Engl J Med"},{"key":"key\n\t\t\t\t20180328065328_CIT0006","doi-asserted-by":"crossref","first-page":"1103","DOI":"10.1001\/jama.297.10.1103","article-title":"How physicians can change the future of health care","volume":"297","author":"Porter","year":"2007","journal-title":"JAMA"},{"key":"key\n\t\t\t\t20180328065328_CIT0007","doi-asserted-by":"crossref","first-page":"504","DOI":"10.1056\/NEJMp1511701","article-title":"Standardizing patient outcomes measurement","volume":"374","author":"Porter","year":"2016","journal-title":"N Engl J Med"},{"key":"key\n\t\t\t\t20180328065328_CIT0008","doi-asserted-by":"crossref","first-page":"251","DOI":"10.1007\/s10654-014-9984-2","article-title":"The global impact of non-communicable diseases on healthcare spending and national income: a systematic review","volume":"30","author":"Muka","year":"2015","journal-title":"Eur J Epidemiol"},{"key":"key\n\t\t\t\t20180328065328_CIT0009","doi-asserted-by":"crossref","first-page":"1247","DOI":"10.1001\/jamaophthalmol.2015.2810","article-title":"A proposed minimum standard set of outcome measures for cataract surgery","volume":"133","author":"Mahmud","year":"2015","journal-title":"JAMA Ophthalmol"},{"key":"key\n\t\t\t\t20180328065328_CIT0010","doi-asserted-by":"crossref","first-page":"322","DOI":"10.1016\/j.crohns.2013.01.010","article-title":"The burden of inflammatory bowel disease in Europe","volume":"7","author":"Burisch","year":"2013","journal-title":"J Crohns Colitis"},{"key":"key\n\t\t\t\t20180328065328_CIT0011","doi-asserted-by":"crossref","first-page":"1679","DOI":"10.1097\/MIB.0000000000000806","article-title":"Health-related quality of life in patients with inflammatory bowel disease 20 years after diagnosis: results from the IBSEN study","volume":"22","author":"Huppertz-Hauss","year":"2016","journal-title":"Inflamm Bowel Dis"},{"key":"key\n\t\t\t\t20180328065328_CIT0012","doi-asserted-by":"crossref","first-page":"720","DOI":"10.1038\/nrgastro.2015.150","article-title":"The global burden of IBD: from 2015 to 2025","volume":"12","author":"Kaplan","year":"2015","journal-title":"Nat Rev Gastroenterol Hepatol"},{"key":"key\n\t\t\t\t20180328065328_CIT0013","doi-asserted-by":"crossref","first-page":"51","DOI":"10.3109\/00365521.2012.685750","article-title":"The burden of inflammatory bowel disease on health care utilization and quality of life","volume":"48","author":"Nurmi","year":"2013","journal-title":"Scand J Gastroenterol"},{"key":"key\n\t\t\t\t20180328065328_CIT0014","doi-asserted-by":"crossref","first-page":"1178","DOI":"10.1136\/gut.2010.234617","article-title":"Surgery for adult Crohn\u2019s disease: what is the actual risk","volume":"60","author":"Bouguen","year":"2011","journal-title":"Gut"},{"key":"key\n\t\t\t\t20180328065328_CIT0015","doi-asserted-by":"crossref","first-page":"S68","DOI":"10.1002\/ibd.20600","article-title":"How often do IBD patients require resection of their intestine","volume":"14","author":"Hancock","year":"2008","journal-title":"Inflamm Bowel Dis"},{"key":"key\n\t\t\t\t20180328065328_CIT0016","doi-asserted-by":"crossref","first-page":"519","DOI":"10.1007\/s10620-012-2371-5","article-title":"Recent trends in the prevalence of Crohn\u2019s disease and ulcerative colitis in a commercially insured US population","volume":"58","author":"Kappelman","year":"2013","journal-title":"Dig Dis Sci"},{"key":"key\n\t\t\t\t20180328065328_CIT0017","doi-asserted-by":"crossref","first-page":"62","DOI":"10.1002\/ibd.21371","article-title":"Utilization of healthcare resources by U.S. children and adults with inflammatory bowel disease","volume":"17","author":"Kappelman","year":"2011","journal-title":"Inflamm Bowel Dis"},{"key":"key\n\t\t\t\t20180328065328_CIT0018","doi-asserted-by":"crossref","first-page":"1504","DOI":"10.1053\/j.gastro.2004.01.063","article-title":"Clinical epidemiology of inflammatory bowel disease: incidence, prevalence, and environmental influences","volume":"126","author":"Loftus","year":"2004","journal-title":"Gastroenterology"},{"key":"key\n\t\t\t\t20180328065328_CIT0019","doi-asserted-by":"crossref","first-page":"46","DOI":"10.1053\/j.gastro.2011.10.001","article-title":"Increasing incidence and prevalence of the inflammatory bowel diseases with time, based on systematic review","volume":"142","author":"Molodecky","year":"2012","journal-title":"Gastroenterology"},{"key":"key\n\t\t\t\t20180328065328_CIT0020","doi-asserted-by":"crossref","first-page":"158","DOI":"10.1053\/j.gastro.2013.04.007","article-title":"Incidence and phenotype of inflammatory bowel disease based on results from the Asia\u2013Pacific Crohn\u2019s and Colitis Epidemiology study","volume":"145","author":"Ng","year":"2013","journal-title":"Gastroenterology"},{"key":"key\n\t\t\t\t20180328065328_CIT0021","doi-asserted-by":"crossref","first-page":"908","DOI":"10.1016\/j.cgh.2013.05.027","article-title":"Translating improved quality of care into an improved quality of life for patients with inflammatory bowel disease","volume":"11","author":"Siegel","year":"2013","journal-title":"Clin Gastroenterol Hepatol"},{"key":"key\n\t\t\t\t20180328065328_CIT0022","doi-asserted-by":"crossref","first-page":"662","DOI":"10.1097\/mib.0b013e31828278a2","article-title":"Quality indicators for inflammatory bowel disease: development of process and outcome measures","volume":"19","author":"Melmed","year":"2013","journal-title":"Inflamm Bowel Dis"},{"key":"key\n\t\t\t\t20180328065328_CIT0023","author":"The IBD Standards Group"},{"key":"key\n\t\t\t\t20180328065328_CIT0024","doi-asserted-by":"crossref","first-page":"e1030","DOI":"10.1542\/peds.2011-1700","article-title":"Improved outcomes in a quality improvement collaborative for pediatric inflammatory bowel disease","volume":"129","author":"Crandall","year":"2012","journal-title":"Pediatrics"},{"key":"key\n\t\t\t\t20180328065328_CIT0025","doi-asserted-by":"crossref","first-page":"2184","DOI":"10.1002\/ibd.21702","article-title":"Development of process and outcome measures for improvement: lessons learned in a quality improvement collaborative for pediatric inflammatory bowel disease","volume":"17","author":"Crandall","year":"2011","journal-title":"Inflamm Bowel Dis"},{"key":"key\n\t\t\t\t20180328065328_CIT0026","doi-asserted-by":"crossref","first-page":"450","DOI":"10.1002\/ibd.21394","article-title":"ImproveCareNow: the development of a pediatric inflammatory bowel disease improvement network","volume":"17","author":"Crandall","year":"2011","journal-title":"Inflamm Bowel Dis"},{"key":"key\n\t\t\t\t20180328065328_CIT0027","doi-asserted-by":"crossref","first-page":"i3319","DOI":"10.1136\/bmj.i3319","article-title":"Patient focused registries can improve health, care, and science","volume":"354","author":"Nelson","year":"2016","journal-title":"BMJ"},{"key":"key\n\t\t\t\t20180328065328_CIT0028"},{"key":"key\n\t\t\t\t20180328065328_CIT0029"},{"key":"key\n\t\t\t\t20180328065328_CIT0030","doi-asserted-by":"crossref","first-page":"533","DOI":"10.3233\/JPD-161055","article-title":"A consensus set of outcomes for Parkinson\u2019s disease from the international consortium for health outcomes measurement","volume":"7","author":"de Roos","year":"2017","journal-title":"J Parkinsons Dis"},{"key":"key\n\t\t\t\t20180328065328_CIT0031","doi-asserted-by":"crossref","first-page":"686","DOI":"10.1001\/jamaoncol.2017.0417","article-title":"An International collaborative standardizing a comprehensive patient-centered outcomes measurement set for colorectal cancer","volume":"3","author":"Zerillo","year":"2017","journal-title":"JAMA Oncol"},{"key":"key\n\t\t\t\t20180328065328_CIT0032","doi-asserted-by":"crossref","first-page":"677","DOI":"10.1001\/jamaoncol.2016.4851","article-title":"A standard set of value-based patient-centered outcomes for breast cancer: The international consortium for health outcomes measurement (ICHOM) initiative","volume":"3","author":"Ong","year":"2017","journal-title":"JAMA Oncol"},{"key":"key\n\t\t\t\t20180328065328_CIT0033","doi-asserted-by":"crossref","first-page":"852","DOI":"10.1183\/13993003.02049-2015","article-title":"Defining a standard set of patient-centred outcomes for lung cancer","volume":"48","author":"Mak","year":"2016","journal-title":"Eur Respir J"},{"key":"key\n\t\t\t\t20180328065328_CIT0034","doi-asserted-by":"crossref","first-page":"e001767","DOI":"10.1161\/JAHA.115.001767","article-title":"Standardized outcome measurement for patients with coronary artery disease: consensus from the International Consortium for Health Outcomes Measurement (ICHOM)","volume":"4","author":"McNamara","year":"2015","journal-title":"J Am Heart Assoc"},{"key":"key\n\t\t\t\t20180328065328_CIT0035","doi-asserted-by":"crossref","first-page":"891","DOI":"10.1016\/j.eururo.2015.06.007","article-title":"Development of a standardized set of patient-centered outcomes for advanced prostate cancer: an international effort for a unified approach","volume":"68","author":"Morgans","year":"2015","journal-title":"Eur Urol"},{"key":"key\n\t\t\t\t20180328065328_CIT0036","doi-asserted-by":"crossref","first-page":"1889","DOI":"10.1007\/s11136-012-0344-y","article-title":"ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research","volume":"22","author":"Reeve","year":"2013","journal-title":"Qual Life Res"},{"key":"key\n\t\t\t\t20180328065328_CIT0037","doi-asserted-by":"crossref","first-page":"i","DOI":"10.3310\/hta2140","article-title":"Evaluating patient-based outcome measures for use in clinical trials","volume":"2","author":"Fitzpatrick","year":"1998","journal-title":"Health Technol Assess"},{"key":"key\n\t\t\t\t20180328065328_CIT0038","doi-asserted-by":"crossref","first-page":"i","DOI":"10.3310\/hta2030","article-title":"Consensus development methods, and their use in clinical guideline development","volume":"2","author":"Murphy","year":"1998","journal-title":"Health Technol Assess"},{"key":"key\n\t\t\t\t20180328065328_CIT0039","author":"Krueger","year":"2002"},{"key":"key\n\t\t\t\t20180328065328_CIT0040","doi-asserted-by":"crossref","first-page":"69","DOI":"10.1186\/1477-7525-6-69","article-title":"Identification of symptom domains in ulcerative colitis that occur frequently during flares and are responsive to changes in disease activity","volume":"6","author":"Joyce","year":"2008","journal-title":"Health Qual Life Outcomes"},{"key":"key\n\t\t\t\t20180328065328_CIT0041","doi-asserted-by":"crossref","first-page":"558","DOI":"10.1097\/MEG.0b013e328326cacb","article-title":"Patient reported symptoms during an ulcerative colitis flare: a Qualitative Focus Group Study","volume":"21","author":"Waljee","year":"2009","journal-title":"Eur J Gastroenterol Hepatol"},{"key":"key\n\t\t\t\t20180328065328_CIT0042","doi-asserted-by":"crossref","first-page":"1092","DOI":"10.1136\/gutjnl-2013-305600","article-title":"Development and validation of a rapid, generic measure of disease control from the patient\u2019s perspective: the IBD-control questionnaire","volume":"63","author":"Bodger","year":"2014","journal-title":"Gut"},{"key":"key\n\t\t\t\t20180328065328_CIT0043","doi-asserted-by":"crossref","first-page":"5A","DOI":"10.1155\/2005\/269076","article-title":"Toward an integrated clinical, molecular and serological classification of inflammatory bowel disease: report of a Working Party of the 2005 Montreal World Congress of Gastroenterology","volume":"19","author":"Silverberg","year":"2005","journal-title":"Can J Gastroenterol"},{"key":"key\n\t\t\t\t20180328065328_CIT0044","doi-asserted-by":"crossref","first-page":"2611","DOI":"10.3748\/wjg.v22.i8.2611","article-title":"Outcomes and patients\u2019 perspectives of transition from paediatric to adult care in inflammatory bowel disease","volume":"22","author":"Bennett","year":"2016","journal-title":"World J Gastroenterol"},{"key":"key\n\t\t\t\t20180328065328_CIT0045","doi-asserted-by":"crossref","first-page":"2169","DOI":"10.1002\/ibd.21576","article-title":"Transitioning the adolescent inflammatory bowel disease patient: guidelines for the adult and pediatric gastroenterologist","volume":"17","author":"Leung","year":"2011","journal-title":"Inflamm Bowel Dis"},{"key":"key\n\t\t\t\t20180328065328_CIT0046","doi-asserted-by":"crossref","first-page":"245","DOI":"10.1097\/00005176-200203000-00001","article-title":"Transition of the patient with inflammatory bowel disease from pediatric to adult care: recommendations of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition","volume":"34","author":"Baldassano","year":"2002","journal-title":"J Pediatr Gastroenterol Nutr"},{"key":"key\n\t\t\t\t20180328065328_CIT0047","doi-asserted-by":"crossref","first-page":"1754","DOI":"10.1038\/ajg.2009.197","article-title":"The Manitoba IBD Index: evidence for a new and simple indicator of IBD activity","volume":"104","author":"Clara","year":"2009","journal-title":"Am J Gastroenterol"},{"key":"key\n\t\t\t\t20180328065328_CIT0048","doi-asserted-by":"crossref","first-page":"804","DOI":"10.1016\/S0016-5085(89)80080-0","article-title":"A new measure of health status for clinical trials in inflammatory bowel disease","volume":"96","author":"Guyatt","year":"1989","journal-title":"Gastroenterology"},{"key":"key\n\t\t\t\t20180328065328_CIT0049","doi-asserted-by":"crossref","first-page":"375","DOI":"10.1053\/j.gastro.2012.04.016","article-title":"Decreasing risk of colorectal cancer in patients with inflammatory bowel disease over 30 years","volume":"143","author":"Jess","year":"2012","journal-title":"Gastroenterology"},{"key":"key\n\t\t\t\t20180328065328_CIT0050","volume-title":"Haemoglobin concentrations for the diagosis of anaemia and assessment of severity","author":"WHO","year":"2011"},{"key":"key\n\t\t\t\t20180328065328_CIT0051","doi-asserted-by":"crossref","first-page":"7","DOI":"10.1016\/j.crohns.2009.12.003","article-title":"The second European evidence-based consensus on the diagnosis and management of Crohn\u2019s disease: definitions and diagnosis","volume":"4","author":"Van Assche","year":"2010","journal-title":"J Crohns Colitis"},{"key":"key\n\t\t\t\t20180328065328_CIT0052","doi-asserted-by":"crossref","first-page":"965","DOI":"10.1016\/j.crohns.2012.09.003","article-title":"Second European evidence-based consensus on the diagnosis and management of ulcerative colitis part 1: definitions and diagnosis","volume":"6","author":"Dignass","year":"2012","journal-title":"J Crohns Colitis"},{"key":"key\n\t\t\t\t20180328065328_CIT0053","doi-asserted-by":"crossref","first-page":"199","DOI":"10.1016\/0168-8510(90)90421-9","article-title":"EuroQol\u2014a new facility for the measurement of health-related quality of life","volume":"16","author":"EuroQol","year":"1990","journal-title":"Health Policy"},{"key":"key\n\t\t\t\t20180328065328_CIT0054","doi-asserted-by":"crossref","first-page":"297","DOI":"10.1016\/S0895-4356(99)00152-3","article-title":"The UK IBDQ\u2014a British version of the inflammatory bowel disease questionnaire. Development and validation","volume":"53","author":"Cheung","year":"2000","journal-title":"J Clin Epidemiol"},{"key":"key\n\t\t\t\t20180328065328_CIT0055","doi-asserted-by":"crossref","first-page":"514","DOI":"10.1016\/S0140-6736(80)92767-1","article-title":"A simple index of Crohn\u2019s-disease activity","volume":"1","author":"Harvey","year":"1980","journal-title":"Lancet"},{"key":"key\n\t\t\t\t20180328065328_CIT0056","doi-asserted-by":"crossref","first-page":"29","DOI":"10.1136\/gut.43.1.29","article-title":"A simple clinical colitis activity index","volume":"43","author":"Walmsley","year":"1998","journal-title":"Gut"},{"key":"key\n\t\t\t\t20180328065328_CIT0057","doi-asserted-by":"crossref","first-page":"156","DOI":"10.1002\/art.10993","article-title":"The self-administered comorbidity questionnaire: a new method to assess comorbidity for clinical and health services research","volume":"49","author":"Sangha","year":"2003","journal-title":"Arthritis Rheum"},{"key":"key\n\t\t\t\t20180328065328_CIT0058","doi-asserted-by":"crossref","first-page":"e1002148","DOI":"10.1371\/journal.pmed.1002148","article-title":"Core Outcome Set\u2014STAndards for Reporting: The COS\u2013STAR Statement","volume":"13","author":"Kirkham","year":"2016","journal-title":"PLoS Med"},{"key":"key\n\t\t\t\t20180328065328_CIT0059","doi-asserted-by":"crossref","first-page":"79","DOI":"10.1186\/1477-7525-4-79","article-title":"Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims: draft guidance","volume":"4","author":"U. S. Department of Health","year":"2006","journal-title":"Health Qual Life Outcomes"},{"key":"key\n\t\t\t\t20180328065328_CIT0060","doi-asserted-by":"crossref","first-page":"15","DOI":"10.1016\/S2468-1253(16)30003-6","article-title":"Infliximab versus ciclosporin for steroid-resistant acute severe ulcerative colitis (CONSTRUCT): a mixed methods, open-label, pragmatic randomised trial","volume":"1","author":"Williams","year":"2016","journal-title":"Lancet Gastroenterol Hepatol"},{"key":"key\n\t\t\t\t20180328065328_CIT0061","first-page":"1571","article-title":"The Short Inflammatory Bowel Disease Questionnaire: a quality of life instrument for community physicians managing inflammatory bowel disease. CCRPT Investigators. Canadian Crohn\u2019s Relapse Prevention Trial","volume":"91","author":"Irvine","year":"1996","journal-title":"Am J Gastroenterol"},{"key":"key\n\t\t\t\t20180328065328_CIT0062","doi-asserted-by":"crossref","first-page":"66","DOI":"10.1093\/ecco-jcc\/jju005","article-title":"Development of a short questionnaire to assess the quality of life in Crohn\u2019s disease and ulcerative colitis","volume":"9","author":"Alrubaiy","year":"2015","journal-title":"J Crohns Colitis"},{"key":"key\n\t\t\t\t20180328065328_CIT0063","doi-asserted-by":"crossref","first-page":"1804","DOI":"10.1038\/ajg.2014.237","article-title":"Development of the NIH Patient-Reported Outcomes Measurement Information System (PROMIS) gastrointestinal symptom scales","volume":"109","author":"Spiegel","year":"2014","journal-title":"Am J Gastroenterol"},{"key":"key\n\t\t\t\t20180328065328_CIT0064","doi-asserted-by":"crossref","first-page":"26","DOI":"10.1186\/1471-2288-11-26","article-title":"What about N? A methodological study of sample-size reporting in focus group studies","volume":"11","author":"Carlsen","year":"2011","journal-title":"BMC Med Res Methodol"},{"key":"key\n\t\t\t\t20180328065328_CIT0065","doi-asserted-by":"crossref","first-page":"1000","DOI":"10.1111\/j.1365-2702.2006.01760.x","article-title":"Literature review: considerations in undertaking focus group research with culturally and linguistically diverse groups","volume":"16","author":"Halcomb","year":"2007","journal-title":"J Clin Nurs"},{"key":"key\n\t\t\t\t20180328065328_CIT0066","doi-asserted-by":"crossref","first-page":"2099","DOI":"10.1002\/ibd.22895","article-title":"Development of an internet-based cohort of patients with inflammatory bowel diseases (CCFA Partners): methodology and initial results","volume":"18","author":"Long","year":"2012","journal-title":"Inflamm Bowel Dis"},{"key":"key\n\t\t\t\t20180328065328_CIT0067","doi-asserted-by":"crossref","first-page":"1315","DOI":"10.1016\/j.cgh.2013.10.019","article-title":"Evaluation of the patient-reported outcomes measurement information system in a large cohort of patients with inflammatory bowel diseases","volume":"12","author":"Kappelman","year":"2014","journal-title":"Clin Gastroenterol Hepatol"},{"key":"key\n\t\t\t\t20180328065328_CIT0068","doi-asserted-by":"crossref","first-page":"485","DOI":"10.1093\/jamia\/ocv191","article-title":"Harnessing person-generated health data to accelerate patient-centered outcomes research: the Crohn\u2019s and Colitis Foundation of America PCORnet Patient Powered Research Network (CCFA Partners)","volume":"23","author":"Chung","year":"2016","journal-title":"J Am Med Inform Assoc"},{"key":"key\n\t\t\t\t20180328065328_CIT0069","author":"BAPEN Malnutrition Advisory Group"},{"key":"key\n\t\t\t\t20180328065328_CIT0070","doi-asserted-by":"crossref","first-page":"247","DOI":"10.1186\/1745-6215-15-247","article-title":"Core Outcome Measures in Effectiveness Trials (COMET) initiative: protocol for an international Delphi study to achieve consensus on how to select outcome measurement instruments for outcomes included in a \u2018core outcome set\u2019","volume":"15","author":"Prinsen","year":"2014","journal-title":"Trials"}],"container-title":["Journal of Crohn's and Colitis"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/academic.oup.com\/ecco-jcc\/article-pdf\/12\/4\/408\/24468259\/jjx161.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2022,8,8]],"date-time":"2022-08-08T05:39:10Z","timestamp":1659937150000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/ecco-jcc\/article\/12\/4\/408\/4694039"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2017,12,5]]},"references-count":70,"journal-issue":{"issue":"4","published-online":{"date-parts":[[2017,12,5]]},"published-print":{"date-parts":[[2018,3,28]]}},"URL":"https:\/\/doi.org\/10.1093\/ecco-jcc\/jjx161","relation":{},"ISSN":["1873-9946","1876-4479"],"issn-type":[{"value":"1873-9946","type":"print"},{"value":"1876-4479","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2018,4]]},"published":{"date-parts":[[2017,12,5]]}}}