{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,24]],"date-time":"2026-08-24T17:36:31Z","timestamp":1787592991194,"version":"build-2736575974"},"reference-count":25,"publisher":"Wiley","issue":"8","license":[{"start":{"date-parts":[[2023,6,13]],"date-time":"2023-06-13T00:00:00Z","timestamp":1686614400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Liver International"],"published-print":{"date-parts":[[2023,8]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Management and follow\u2010up strategies for primary sclerosing cholangitis (PSC) vary. The aim of the present study was to assess patient\u2010reported quality of care to identify the most important areas for improvement.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Data were collected via an online survey hosted on the EU Survey platform in 11 languages between October 2021 and January 2022. Questions were asked about the disease, symptoms, treatment, investigations and quality of care.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>In total, 798 nontransplanted people with PSC from 33 countries responded. Eighty\u2010six per cent of respondents reported having had at least one symptom. Twenty\u2010four per cent had never undergone an elastography, and 8% had not had a colonoscopy. Nearly half (49%) had never undergone a bone density scan. Ursodeoxycholic acid (UDCA) was used in 90\u201393% in France, Netherlands and Germany, and 49\u201350% in the United Kingdom and Sweden. Itch was common (60%), and 50% of those had received any medication. Antihistamines were taken by 27%, cholestyramine by 21%, rifampicin by 13% and bezafibrate by 6.5%. Forty\u2010one per cent had been offered participation in a clinical trial or research. The majority (91%) reported that they were confident with their care although half of the individuals reported the need for more information on disease prognosis and diet.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Symptom burden in PSC is high, and the most important areas of improvement are disease monitoring with more widespread use of elastography, bone density scan and appropriate treatment for itch. Personalised prognostic information should be offered to all individuals with PSC and include information on how they can improve their health.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/liv.15650","type":"journal-article","created":{"date-parts":[[2023,6,14]],"date-time":"2023-06-14T02:52:04Z","timestamp":1686711124000},"page":"1654-1662","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":14,"title":["Patient\u2010reported quality of care in primary sclerosing cholangitis"],"prefix":"10.1111","volume":"43","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4622-5590","authenticated-orcid":false,"given":"Martine","family":"Walmsley","sequence":"first","affiliation":[{"name":"PSC Support  Oxford UK"},{"name":"European Reference Network on Hepatological Diseases (ERN RARE\u2010LIVER)"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1335-5498","authenticated-orcid":false,"given":"D\u00e1vid","family":"Tornai","sequence":"additional","affiliation":[{"name":"European Reference Network on Hepatological Diseases (ERN RARE\u2010LIVER)"},{"name":"Division of Gastroenterology, Department of Internal Medicine, Faculty of Medicine University of Debrecen  Debrecen Hungary"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nora","family":"Cazzagon","sequence":"additional","affiliation":[{"name":"European Reference Network on Hepatological Diseases (ERN RARE\u2010LIVER)"},{"name":"Department of Surgery, Oncology and Gastroenterology University of Padova  Padova Italy"},{"name":"Azienda Ospedale \u2013 Universit\u00e0 Padova  Padova Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angela","family":"Leburgue","sequence":"additional","affiliation":[{"name":"European Reference Network on Hepatological Diseases (ERN RARE\u2010LIVER)"},{"name":"Albi, Association pour la Lutte contre les maladies inflammatoires du foie et des voies biliaires  Versailles France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anna","family":"Mrzljak","sequence":"additional","affiliation":[{"name":"European Reference Network on Hepatological Diseases (ERN RARE\u2010LIVER)"},{"name":"Department of Medicine Merkur University Hospital  Zagreb Croatia"},{"name":"School of Medicine University of Zagreb  Zagreb Croatia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0903-1415","authenticated-orcid":false,"given":"Henrike","family":"Lenzen","sequence":"additional","affiliation":[{"name":"European Reference Network on Hepatological Diseases (ERN RARE\u2010LIVER)"},{"name":"Department of Gastroenterology, Hepatology and Endocrinology Hannover Medical School  Hannover Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1445-0443","authenticated-orcid":false,"given":"Marco","family":"Carbone","sequence":"additional","affiliation":[{"name":"European Reference Network on Hepatological Diseases (ERN RARE\u2010LIVER)"},{"name":"Division of Gastroenterology University of Milano\u2010Bicocca  Milan Italy"},{"name":"Fondazione IRCCS San Gerardo dei Tintori  Monza Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jo\u00e3o","family":"Madaleno","sequence":"additional","affiliation":[{"name":"European Reference Network on Hepatological Diseases (ERN RARE\u2010LIVER)"},{"name":"Liver Disease Unit, Internal Medicine Department Centro Hospitalar e Universit\u00e1rio de Coimbra  Coimbra Portugal"},{"name":"Faculty of Medicine University of Coimbra  Coimbra Portugal"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0561-7902","authenticated-orcid":false,"given":"Ana","family":"Lleo","sequence":"additional","affiliation":[{"name":"European Reference Network on Hepatological Diseases (ERN RARE\u2010LIVER)"},{"name":"Department of Biomedical Sciences Humanitas University  Milan Italy"},{"name":"Division of Internal Medicine and Hepatology, Department of Gastroenterology Humanitas Clinical and Research Center IRCCS  Rozzano Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3099-2667","authenticated-orcid":false,"given":"Norman","family":"Junge","sequence":"additional","affiliation":[{"name":"European Reference Network on Hepatological Diseases (ERN RARE\u2010LIVER)"},{"name":"Division for Pediatric Gastroenterology and Hepatology, Department of Pediatric Kidney, Liver, and Metabolic Diseases Hannover Medical School  Hannover Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christoph","family":"Schramm","sequence":"additional","affiliation":[{"name":"European Reference Network on Hepatological Diseases (ERN RARE\u2010LIVER)"},{"name":"I. 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