{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,10]],"date-time":"2026-09-10T00:47:38Z","timestamp":1789001258779,"version":"build-2803163510"},"reference-count":21,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2023,1,24]],"date-time":"2023-01-24T00:00:00Z","timestamp":1674518400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Hepatology Research"],"published-print":{"date-parts":[[2023,5]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Aim<\/jats:title><jats:p>This study aims to assess the health\u2010related quality of life (HRQoL) in a Dutch population of patients with primary biliary cholangitis (PBC) in relation to the prognosis and need for second line\u2010therapy, based on both objective disease parameters and patients\u2019 perspectives.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>In this cross\u2010sectional multicenter study, HRQoL was assessed by using the Dutch PBC\u201040 according to objective clinical parameters and patients\u2019 perspectives on treatment and prognosis.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>In total, 178\/269 (66%) patients responded; mean age 61.2 (SD 9.9) years and 165 (92.7%) women. The PBC\u201040 domain scores did not differ according to the GLOBE score response (<jats:italic>p<\/jats:italic>\u00a0&gt;\u00a00.05 for all) or according to the POISE criteria (<jats:italic>p<\/jats:italic>\u00a0&gt;\u00a00.05), except for the domain itch (<jats:italic>p<\/jats:italic>\u00a0=\u00a00.031). Patients who considered their survival to be impaired scored higher on all domains as compared to those expecting a normal prognosis (<jats:italic>p<\/jats:italic>\u00a0&lt;\u00a00.05). Similarly, PBC\u201040 domain scores were higher among patients who considered that they were in need of additional therapy compared to those who did not (<jats:italic>p<\/jats:italic>\u00a0&lt;\u00a00.05 for all, except for domain itch [<jats:italic>p<\/jats:italic>\u00a0=\u00a00.056]). However, 45\/62 (72.6%) patients with a self\u2010expected impaired prognosis had a GLOBE score indicative of a normal prognosis. Twenty\u2010five of the 40 (62.5%) patients who believed they needed additional therapy were below POISE criteria.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>The HRQoL of patients with PBC was impaired in terms of nonfavorable disease status according to the expectations of patients, but not according to objective disease parameters. Substantial discrepancies between patients\u2019 perspectives and objective parameters were observed, which highlights the need for better patient guidance among patient with PBC.<\/jats:p><\/jats:sec>","DOI":"10.1111\/hepr.13880","type":"journal-article","created":{"date-parts":[[2023,1,13]],"date-time":"2023-01-13T03:15:14Z","timestamp":1673579714000},"page":"401-408","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":11,"title":["Quality of life in Dutch patients with primary biliary cholangitis: Discrepancies between patients\u2019 perspectives and objective disease parameters"],"prefix":"10.1111","volume":"53","author":[{"given":"Rozanne C.","family":"de Veer","sequence":"first","affiliation":[{"name":"Department of Gastroenterology and Hepatology Erasmus University Medical Center  Rotterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maria C.","family":"van Hooff","sequence":"additional","affiliation":[{"name":"Department of Gastroenterology and Hepatology Erasmus University Medical Center  Rotterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Geraldine","family":"da Silva","sequence":"additional","affiliation":[{"name":"Department of Gastroenterology and Hepatology Erasmus University Medical Center  Rotterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maren H.","family":"Harms","sequence":"additional","affiliation":[{"name":"Department of Gastroenterology and Hepatology Erasmus University Medical Center  Rotterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Herold J.","family":"Metselaar","sequence":"additional","affiliation":[{"name":"Department of Gastroenterology and Hepatology Erasmus University Medical Center  Rotterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jos\u00e9","family":"Willemse","sequence":"additional","affiliation":[{"name":"Dutch Liver Patients Association  Hoogland The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elaine","family":"Utomo","sequence":"additional","affiliation":[{"name":"Independent Researcher  Berkel en Rodenrijs The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Adriaan J.","family":"van der Meer","sequence":"additional","affiliation":[{"name":"Department of Gastroenterology and Hepatology Erasmus University Medical Center  Rotterdam The 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