{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,10]],"date-time":"2026-09-10T07:06:51Z","timestamp":1789024011660,"version":"build-2803163510"},"reference-count":42,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2026,9,9]],"date-time":"2026-09-09T00:00:00Z","timestamp":1788912000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,9,9]],"date-time":"2026-09-09T00:00:00Z","timestamp":1788912000000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/501100000724","name":"Health Foundation","doi-asserted-by":"publisher","award":["FR\u2010000002444"],"award-info":[{"award-number":["FR\u2010000002444"]}],"id":[{"id":"10.13039\/501100000724","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000272","name":"National Institute for Health and Care Research","doi-asserted-by":"publisher","award":["NIHR303356"],"award-info":[{"award-number":["NIHR303356"]}],"id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000272","name":"National Institute for Health and Care Research","doi-asserted-by":"publisher","award":["NIHR306419"],"award-info":[{"award-number":["NIHR306419"]}],"id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2026,10]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Inflammatory bowel disease (IBD) significantly impacts quality of life and has high healthcare contact. Ensuring that patients are experiencing the best care is therefore essential and has been the focus of many quality improvement initiatives. To support this, in collaboration with patients, we developed a patient\u2010reported experience measure for IBD (IBD\u2010PREM) for use in a UK context. This article refers to the validation of this patient\u2010developed measure to ensure it is valid and reliable.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Using data from the AWARE\u2010IBD study, 287 participants provided data between November 2021 and November 2024. The IBD\u2010PREM as well as the IBD\u2010Control questionnaire was collected at 3\u2010month intervals as well as 2 weeks post baseline. Validation was completed through testing the following aspects: acceptability (response rate and missing data rates), reliability (internal consistency and test\u2010retest reliability), validity (construct and structural validity using factor analysis) and responsiveness (ceiling\/floor effects and smallest detectable difference).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      High response rates and low missing data demonstrated acceptability of the IBD\u2010PREM. There was also good test\u2010retest reliability (ICC\u2009=\u20090.88). Low ceiling and floor effects demonstrate suitable responsiveness as did the ability to differentiate between patients with active and inactive disease (effect size\u2009=\u20090.62). The confirmatory factor analysis suggested the current domain structure (three domains) is not optimum and factor loadings indicated some potentially redundant items, which is supported by the high internal consistency (\n                      <jats:italic>\u03b1<\/jats:italic>\n                      \u2009=\u20090.97).\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>The patient\u2010developed IBD\u2010PREM is a tool that can be used as a method for assessing the healthcare experiences of IBD patients in the United Kingdom. Superior psychometric properties were found compared to measures developed through traditional researcher\u2010led approaches suggesting the benefit of involving patients early in the methodological process. Further refinement in terms of item reduction and domain restructure should be implemented to optimise the PREM as well as external validity to other contexts.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Patient or Public Contribution<\/jats:title>\n                    <jats:p>Patients and members of the public were engaged from an early stage in the development of the PREM, contributing directly to the design and content of the IBD\u2010PREM. This article goes on to validate this patient\u2010created measure with input from a patient representative.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hex.70814","type":"journal-article","created":{"date-parts":[[2026,9,10]],"date-time":"2026-09-10T06:31:21Z","timestamp":1789021881000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Validation of a Patient\u2010Created, Patient\u2010Reported Experience Measure for Inflammatory Bowel Disease in the United Kingdom"],"prefix":"10.1111","volume":"29","author":[{"ORCID":"https:\/\/orcid.org\/0009-0000-0394-0012","authenticated-orcid":false,"given":"Zoe","family":"Guy","sequence":"first","affiliation":[{"name":"Clinical Trials Research Unit The University of Sheffield Sheffield UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6409-4793","authenticated-orcid":false,"given":"Daniel","family":"Hind","sequence":"additional","affiliation":[{"name":"Clinical Trials Research Unit The University of Sheffield Sheffield UK"},{"name":"Leeds Institute of Health Sciences Leeds UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1900-2773","authenticated-orcid":false,"given":"Nikki","family":"Totton","sequence":"additional","affiliation":[{"name":"Clinical Trials Research Unit The University of Sheffield Sheffield UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1927-471X","authenticated-orcid":false,"given":"Elena","family":"Sheldon","sequence":"additional","affiliation":[{"name":"Sheffield Health and Social Care NHS Foundation Trust Sheffield UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2642-1108","authenticated-orcid":false,"given":"Naseeb","family":"Ezaydi","sequence":"additional","affiliation":[{"name":"Clinical Trials Research Unit The University of Sheffield Sheffield UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6519-3558","authenticated-orcid":false,"given":"Matt","family":"Bursnall","sequence":"additional","affiliation":[{"name":"Clinical Trials Research Unit The University of Sheffield Sheffield UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8037-793X","authenticated-orcid":false,"given":"Alan","family":"Lobo","sequence":"additional","affiliation":[{"name":"Sheffield Inflammatory Bowel Disease Centre Sheffield Teaching Hospitals NHS Foundation Trust Sheffield UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,9,9]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2036.2004.02053.x"},{"key":"e_1_2_10_3_1","unstructured":"IBD UK. 2024 IBD UK Report: The State of IBD Care in the UK. IBD UK accessed by August 4 2025.https:\/\/ibduk.org\/reports\/2024-ibd-uk-report-the-state-of-ibd-care-in-the-uk."},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0298374"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.2147\/PROM.S201737"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1093\/ecco-jcc\/jjaa174"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.g2225"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1108\/IJHCQA-07-2018-0183"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1186\/1472-6963-7-197"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.1111\/1475-6773.13187"},{"key":"e_1_2_10_11_1","doi-asserted-by":"publisher","DOI":"10.1093\/intqhc\/mzab023"},{"key":"e_1_2_10_12_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamahealthforum.2022.0326"},{"key":"e_1_2_10_13_1","doi-asserted-by":"publisher","DOI":"10.1093\/ecco-jcc\/jjaa221"},{"key":"e_1_2_10_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0016-5085(23)02743-9"},{"key":"e_1_2_10_15_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1572-0241.1999.01536.x"},{"key":"e_1_2_10_16_1","doi-asserted-by":"publisher","DOI":"10.1097\/00006842-199111000-00010"},{"key":"e_1_2_10_17_1","doi-asserted-by":"publisher","DOI":"10.1097\/MPG.0000000000000357"},{"key":"e_1_2_10_18_1","doi-asserted-by":"publisher","DOI":"10.1177\/2381468318807458"},{"key":"e_1_2_10_19_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.13647"},{"key":"e_1_2_10_20_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.70562"},{"key":"e_1_2_10_21_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.70088"},{"key":"e_1_2_10_22_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.13811"},{"key":"e_1_2_10_23_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.13366"},{"key":"e_1_2_10_24_1","unstructured":"IBD UK. The Hidden Cost and a Vision for Change. IBD UK accessed 22 October 2025.https:\/\/ibduk.org\/reports\/crohns-and-colitis-care-in-the-uk-the-hidden-cost-and-a-vision-for-change."},{"key":"e_1_2_10_25_1","unstructured":"Institute of Medicine (US). Committee on Quality of Health Care in America. Crossing the Quality Chasm: A New Health System for the 21st Century. COMMITTEE ON QUALITY OF HEALTH CARE IN AMERICA accessed 4 August 2025.https:\/\/www.ncbi.nlm.nih.gov\/books\/NBK222278\/."},{"key":"e_1_2_10_26_1","unstructured":"NICE. Patient Experience in Adult NHS Services: Improving the Experience of Care for People Using Adult NHS Services. NICE accessed 4 August 2025.https:\/\/www.nice.org.uk\/guidance\/cg138."},{"key":"e_1_2_10_27_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jclinepi.2010.02.006"},{"key":"e_1_2_10_28_1","unstructured":"Crohn's & Colitis UK. AWARE\u2010IBD = Putting People With Inflammatory Bowel Disease (IBD) in Control of Their Care. The Health Foundation accessed 4 August 2025.https:\/\/www.health.org.uk\/funding-and-fellowships\/projects\/aware-ibd-putting-people-with-inflammatory-bowel-disease-ibd-in."},{"key":"e_1_2_10_29_1","unstructured":"AWARE\u2010IBD. 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