{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,14]],"date-time":"2026-10-14T21:42:55Z","timestamp":1792014175451,"version":"4.4.0"},"reference-count":17,"publisher":"Ovid Technologies (Wolters Kluwer Health)","issue":"2","license":[{"start":{"date-parts":[[2023,2,1]],"date-time":"2023-02-01T00:00:00Z","timestamp":1675209600000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/ http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["lww.com","ovid.com"],"crossmark-restriction":true},"short-container-title":[],"abstract":"\n Objectives:<\/jats:title>\n To understand the full impact of primary sclerosing cholangitis (PSC) on patients\u2019 health, it is important to assess their health-related quality of life (HRQL). Using the Chronic Liver Disease Questionnaire (CLDQ), we aimed to develop and validate a PSC-specific HRQL instrument.<\/jats:p>\n <\/jats:sec>\n \n Methods:<\/jats:title>\n Previously collected clinical and patient-reported outcome data from PSC patients were used. The original CLDQ with 29 items was subjected to item reduction, followed by factor analysis. A standard HRQL instrument validation pipeline was then applied to the new CLDQ-PSC.<\/jats:p>\n <\/jats:sec>\n \n Results:<\/jats:title>\n \n There were 100 PSC patients (44\u00b113\u00a0y, 32% male, 79% college educated, 39% cirrhosis, 67% inflammatory bowel disease, 66% ulcerative colitis, and 50% on ursodeoxycholic acid After item reduction and exploratory factor analysis, there were 24 items and 5 factors left; based on factor loadings, the factors were named emotional function, fatigue, symptoms, worry, and sleep. Internal consistency assessment returned Cronbach alpha 0.85\u20130.94, item-to-own domain correlations >0.66 for 22\/24 items. Known-groups validity suggests discrimination between PSC patients with and without cirrhosis or its complications, obesity, history of depression, weight loss, and PSC patients on versus not on ursodeoxycholic acid (\n p<\/jats:italic>\n <0.05 for all or select CLDQ-PSC domains). Relevant items of Short Form-36 and CLDQ-PSC were highly correlated (all\n p<\/jats:italic>\n <0.0001). Matching with items of another PSC-specific instrument (PSC-patient-reported outcome; 42 items) for relevance and redundancy suggests that CLDQ-PSC is a relevant, comprehensive, and short HRQL instrument, which can be used for patients with PSC.\n <\/jats:p>\n <\/jats:sec>\n \n Conclusions:<\/jats:title>\n The CLDQ-PSC is a PSC-specific HRQL instrument that was developed using an established methodology and demonstrated good psychometric characteristics.<\/jats:p>\n <\/jats:sec>","DOI":"10.1097\/hc9.0000000000000049","type":"journal-article","created":{"date-parts":[[2023,2,1]],"date-time":"2023-02-01T16:38:16Z","timestamp":1675269496000},"page":"e0049-e0049","update-policy":"https:\/\/doi.org\/10.1097\/lww.0000000000001000","source":"Crossref","is-referenced-by-count":23,"title":["Development and validation of a primary sclerosing cholangitis-specific health-related quality of life instrument: CLDQ-PSC"],"prefix":"10.1097","volume":"7","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9313-577X","authenticated-orcid":false,"given":"Zobair M.","family":"Younossi","sequence":"first","affiliation":[{"name":"Betty and Guy Beatty Center for Integrated Research, Inova Health System, Falls Church, Virginia, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maria","family":"Stepanova","sequence":"additional","affiliation":[{"name":"Betty and Guy Beatty Center for Integrated Research, Inova Health System, Falls Church, Virginia, USA"},{"name":"Center for Outcomes Research in Liver Disease, Washington, District of Columbia, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Issah","family":"Younossi","sequence":"additional","affiliation":[{"name":"Center for Outcomes Research in Liver Disease, Washington, District of Columbia, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrei","family":"Racila","sequence":"additional","affiliation":[{"name":"Betty and Guy Beatty Center for Integrated Research, Inova Health System, Falls Church, Virginia, USA"},{"name":"Center for Outcomes Research in Liver Disease, Washington, District of Columbia, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"276","published-online":{"date-parts":[[2023,2]]},"reference":[{"key":"R2-20240826","doi-asserted-by":"crossref","first-page":"86","DOI":"10.1186\/1741-7015-9-86","article-title":"Measuring patient-reported outcomes: moving beyond misplaced common sense to hard science","volume":"9","author":"McKenna","year":"2011","journal-title":"BMC Med"},{"key":"R4-20240826","doi-asserted-by":"crossref","first-page":"117","DOI":"10.1186\/s41687-021-00395-x","article-title":"Development of a conceptual model for research on cyclical variation of patient reported outcome measurements (PROMs) in patients with chronic conditions: a scoping review","volume":"5","author":"Davey","year":"2021","journal-title":"J Patient Rep Outcomes"},{"key":"R5-20240826","doi-asserted-by":"crossref","first-page":"S217","DOI":"10.1097\/00005650-198903001-00018","article-title":"Generic and disease-specific measures in assessing health status and quality of life","volume":"27","author":"Patrick","year":"1989","journal-title":"Med Care"},{"key":"R6-20240826","doi-asserted-by":"crossref","first-page":"52","DOI":"10.1016\/S0895-4356(02)00537-1","article-title":"Comparative responsiveness of generic and specific quality-of-life instruments","volume":"56","author":"Wiebe","year":"2003","journal-title":"J Clin Epidemiol"},{"key":"R7-20240826","doi-asserted-by":"crossref","first-page":"295","DOI":"10.1136\/gut.45.2.295","article-title":"Development of a disease specific questionnaire to measure health related quality of life in patients with chronic liver 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CLDQ-NAFLD","volume":"37","author":"Younossi","year":"2017","journal-title":"Liver Int"},{"key":"R11-20240826","doi-asserted-by":"crossref","first-page":"1088","DOI":"10.1111\/j.1365-2036.2008.03817.x","article-title":"Prospective validation of the short form liver disease quality of life instrument","volume":"28","author":"Kanwal","year":"2008","journal-title":"Aliment Pharmacol Ther"},{"key":"R12-20240826","doi-asserted-by":"crossref","first-page":"155","DOI":"10.1002\/hep.29664","article-title":"Development and validation of a primary sclerosing cholangitis-specific patient-reported outcomes instrument: The PSC PRO","volume":"68","author":"Younossi","year":"2018","journal-title":"Hepatology"},{"key":"R13-20240826","doi-asserted-by":"crossref","first-page":"533","DOI":"10.1007\/s40271-020-00485-w","article-title":"Development of a patient-reported outcome measure for non-alcoholic steatohepatitis (NASH-CHECK): results of a qualitative study","volume":"14","author":"Doward","year":"2021","journal-title":"Patient"},{"key":"R14-20240826","article-title":"Clinical practice guidelines on sclerosing cholangitis","year":"2022","journal-title":"J Hepatol"},{"key":"R15-20240826","first-page":"10","article-title":"The validity and reliability of the Indonesian version of the Chronic Liver Disease Questionnaire (CLDQ) in measuring quality of life in patients with liver cirrhosis","volume":"54","author":"Hasan","year":"2022","journal-title":"Acta Med Indones"},{"key":"R16-20240826","doi-asserted-by":"crossref","first-page":"240","DOI":"10.15403\/jgld-3405","article-title":"Validation and performance of Chronic Liver Disease Questionnaire (CLDQ-RO) in the Romanian population","volume":"30","author":"Taru","year":"2021","journal-title":"J Gastrointestin Liver Dis"},{"key":"R17-20240826","doi-asserted-by":"crossref","first-page":"191","DOI":"10.1002\/jgh3.12239","article-title":"Clinical validation of the chronic liver disease questionnaire for the Chinese population in Singapore","volume":"4","author":"Chang","year":"2019","journal-title":"JGH Open"},{"key":"R18-20240826","doi-asserted-by":"crossref","first-page":"217","DOI":"10.1007\/s12664-017-0756-2","article-title":"Translation and validation of chronic liver disease questionnaire (CLDQ) in Tamil language","volume":"36","author":"Goel","year":"2017","journal-title":"Indian J Gastroenterol"},{"key":"R19-20240826","doi-asserted-by":"crossref","first-page":"e013873","DOI":"10.1136\/bmjopen-2016-013873","article-title":"Translation, adaptation and validation of two versions of the Chronic Liver Disease Questionnaire in Malaysian patients for speakers of both English and Malay languages: a cross-sectional study","volume":"7","author":"Khairullah","year":"2017","journal-title":"BMJ Open"}],"container-title":["Hepatology 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