{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,30]],"date-time":"2026-09-30T04:03:40Z","timestamp":1790741020677,"version":"4.1.0"},"reference-count":38,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2022,10,3]],"date-time":"2022-10-03T00:00:00Z","timestamp":1664755200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100007565","name":"Consumers, Health, Agriculture and Food Executive Agency","doi-asserted-by":"publisher","award":["869229"],"award-info":[{"award-number":["869229"]}],"id":[{"id":"10.13039\/501100007565","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Liver International"],"published-print":{"date-parts":[[2023,2]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background and Aims<\/jats:title><jats:p>Autoimmune liver diseases (AILDs) are associated with impaired health\u2010related quality of life (HrQoL). The aim of this project was to identify potentially modifiable factors related to HrQoL in a large transnational cohort of patients with AILDs.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A cross\u2010sectional online survey was conducted on patients with autoimmune hepatitis (AIH), primary biliary cholangitis (PBC) or primary sclerosing cholangitis from 15 European countries. HrQoL was measured with EQ\u20105D\u20105L and EQ visual analogue scale (EQ\u2010VAS) and analysed in relation to demographic, psychosocial, disease\u2010 and treatment\u2010related factors. A Patient Health Questionnaire\u20102 score &gt;3 indicated relevant depression. Multivariable linear regression analyses were used to identify potentially modifiable factors associated with HrQoL and confidence in treatment whilst adjusting for known confounders.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>A group of 1178 European patients (79% female, mean age 48\u2009\u00b1\u200914\u2009years) participated in the study. HrQoL was impaired in all three diseases (mean EQ\u20105D\u20105L\u00a0=\u00a00.75, mean EQ VAS\u00a0=\u00a068.9), most markedly in PBC (mean EQ\u20105D\u20105L\u00a0=\u00a00.73, mean EQ\u2010VAS\u00a0=\u00a066.2). Relevant depression, which was detected in 17% of patients, was prominently associated with impaired HrQoL. In the regression analysis, treatment confidence was identified as an important modifiable factor positively contributing to HrQoL. This influence was observable even after adjusting for other covariates including depression. Management in a transplant centre, treatment with azathioprine in AIH, and with ursodeoxycholic acid in PBC, was associated with increased treatment confidence. Finally, improved patient\u2010physician relationships contributed to treatment confidence.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Treatment confidence is a relevant modifiable determinant of HrQoL and should be further investigated to improve the standards of care for patients with AILDs.<\/jats:p><\/jats:sec>","DOI":"10.1111\/liv.15440","type":"journal-article","created":{"date-parts":[[2022,9,30]],"date-time":"2022-09-30T07:39:20Z","timestamp":1664523560000},"page":"381-392","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":28,"title":["Confidence in treatment is contributing to quality of life in autoimmune liver diseases. The results of <scp>ERN RARE\u2010LIVER<\/scp> online survey"],"prefix":"10.1111","volume":"43","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8740-5243","authenticated-orcid":false,"given":"Ewa","family":"Wunsch","sequence":"first","affiliation":[{"name":"Translational Medicine Group Pomeranian Medical University in Szczecin  Szczecin Poland"},{"name":"RARE\u2010LIVER European Reference Network"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Linda","family":"Krause","sequence":"additional","affiliation":[{"name":"Institute of Medical Biometry and Epidemiology University Medical Centre Hamburg\u2010Eppendorf  Hamburg Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3070-8443","authenticated-orcid":false,"given":"Tom JG","family":"Gevers","sequence":"additional","affiliation":[{"name":"RARE\u2010LIVER European Reference Network"},{"name":"Division of Gastroenterology and Hepatology, Department of Internal Medicine Maastricht University Medical Center+  Maastricht The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christoph","family":"Schramm","sequence":"additional","affiliation":[{"name":"RARE\u2010LIVER European Reference Network"},{"name":"Department of Medicine and Martin Zeitz Centre for Rare Diseases University Medical Centre Hamburg\u2010Eppendorf  Hamburg Germany"},{"name":"Hamburg Center for Translational Immunology (HCTI)  Hamburg Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1941-0336","authenticated-orcid":false,"given":"Maciej K.","family":"Janik","sequence":"additional","affiliation":[{"name":"RARE\u2010LIVER European Reference Network"},{"name":"Liver and Internal Medicine Unit Medical University of Warsaw  Warsaw Poland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0113-0777","authenticated-orcid":false,"given":"Marcin","family":"Krawczyk","sequence":"additional","affiliation":[{"name":"RARE\u2010LIVER European Reference Network"},{"name":"Department of Medicine II Saarland University Medical Center  Homburg Germany"},{"name":"Laboratory of Metabolic Liver Diseases, Department of General, Transplant and Liver Surgery Medical University of Warsaw  Warsaw Poland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jos\u00e9","family":"Willemse","sequence":"additional","affiliation":[{"name":"RARE\u2010LIVER European Reference Network"},{"name":"Dutch Liver Patients Association  Hoogland The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Natalie","family":"Uhlenbusch","sequence":"additional","affiliation":[{"name":"RARE\u2010LIVER European Reference Network"},{"name":"Department of Psychosomatic Medicine and Psychotherapy University Medical Center Hamburg\u2010Eppendorf  Hamburg Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bernd","family":"L\u00f6we","sequence":"additional","affiliation":[{"name":"RARE\u2010LIVER European Reference Network"},{"name":"Department of Psychosomatic Medicine and Psychotherapy University Medical Center Hamburg\u2010Eppendorf  Hamburg Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ansgar Wilhelm","family":"Lohse","sequence":"additional","affiliation":[{"name":"RARE\u2010LIVER European Reference Network"},{"name":"Department of Medicine University Medical Centre Hamburg\u2010Eppendorf  Hamburg Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1817-0724","authenticated-orcid":false,"given":"Piotr","family":"Milkiewicz","sequence":"additional","affiliation":[{"name":"Translational Medicine Group Pomeranian Medical University in Szczecin  Szczecin Poland"},{"name":"RARE\u2010LIVER European Reference Network"},{"name":"Liver and Internal Medicine Unit Medical University of Warsaw  Warsaw Poland"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2022,10,3]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jhep.2015.06.030"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jhep.2009.04.009"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1023\/B:MEBR.0000043986.70972.3b"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.4254\/wjh.v13.i11.1642"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jhep.2017.11.004"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/liv.12730"},{"key":"e_1_2_11_8_1","doi-asserted-by":"publisher","DOI":"10.1002\/hep.26365"},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jhep.2013.10.035"},{"key":"e_1_2_11_10_1","doi-asserted-by":"publisher","DOI":"10.1111\/liv.13960"},{"key":"e_1_2_11_11_1","doi-asserted-by":"publisher","DOI":"10.1111\/liv.12775"},{"key":"e_1_2_11_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.clinre.2014.07.003"},{"key":"e_1_2_11_13_1","doi-asserted-by":"publisher","DOI":"10.4065\/81.10.1361"},{"key":"e_1_2_11_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jhep.2012.07.032"},{"key":"e_1_2_11_15_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-019-1152-z"},{"key":"e_1_2_11_16_1","doi-asserted-by":"publisher","DOI":"10.2147\/CLEP.S236952"},{"key":"e_1_2_11_17_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0239035"},{"key":"e_1_2_11_18_1","doi-asserted-by":"publisher","DOI":"10.1097\/00007632-200012150-00014"},{"key":"e_1_2_11_19_1","doi-asserted-by":"publisher","DOI":"10.1002\/hep.30031"},{"key":"e_1_2_11_20_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamainternmed.2013.12179"},{"key":"e_1_2_11_21_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jagp.2013.01.076"},{"key":"e_1_2_11_22_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2020.6504"},{"key":"e_1_2_11_23_1","doi-asserted-by":"publisher","DOI":"10.1097\/01.MLR.0000093487.78664.3C"},{"key":"e_1_2_11_24_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jad.2009.06.019"},{"key":"e_1_2_11_25_1","doi-asserted-by":"publisher","DOI":"10.1007\/978-94-007-7596-1_3"},{"key":"e_1_2_11_26_1","doi-asserted-by":"publisher","DOI":"10.1002\/hep.30568"},{"key":"e_1_2_11_27_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0234624"},{"key":"e_1_2_11_28_1","doi-asserted-by":"publisher","DOI":"10.1111\/1468-0009.00223"},{"key":"e_1_2_11_29_1","doi-asserted-by":"publisher","DOI":"10.2307\/3350245"},{"key":"e_1_2_11_30_1","first-page":"213","article-title":"Linking primary care performance to outcomes of care","volume":"47","author":"Safran DG","year":"1998","journal-title":"J Fam Pract"},{"key":"e_1_2_11_31_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2013-002762"},{"key":"e_1_2_11_32_1","doi-asserted-by":"publisher","DOI":"10.1001\/archinte.160.15.2257"},{"key":"e_1_2_11_33_1","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.1999.17.1.371"},{"key":"e_1_2_11_34_1","doi-asserted-by":"publisher","DOI":"10.1097\/00005650-199802000-00007"},{"key":"e_1_2_11_35_1","first-page":"1091","article-title":"Development of the trust in physician scale: a measure to assess interpersonal trust in patient\u2010physician relationships","volume":"67","author":"Anderson LA","year":"1990","journal-title":"Psychol Rep"},{"key":"e_1_2_11_36_1","doi-asserted-by":"publisher","DOI":"10.1002\/hep4.1467"},{"key":"e_1_2_11_37_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jhep.2022.05.011"},{"key":"e_1_2_11_38_1","volume-title":"Ma\u00dfnahmen zur Verbesserung der gesundheitlichen situation von menschen mit seltenen Erkrankungen in Deutschland [Measures to improve the health situation of patients with rare diseases in Germany]","author":"Eidt D","year":"2009"},{"key":"e_1_2_11_39_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2019-033353"}],"container-title":["Liver International"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/liv.15440","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/liv.15440","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/liv.15440","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,8,17]],"date-time":"2023-08-17T19:58:55Z","timestamp":1692302335000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/liv.15440"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,10,3]]},"references-count":38,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2023,2]]}},"alternative-id":["10.1111\/liv.15440"],"URL":"https:\/\/doi.org\/10.1111\/liv.15440","archive":["Portico"],"relation":{},"ISSN":["1478-3223","1478-3231"],"issn-type":[{"value":"1478-3223","type":"print"},{"value":"1478-3231","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,10,3]]},"assertion":[{"value":"2022-06-22","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-09-19","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-10-03","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}