Confidence in treatment is contributing to quality of life in autoimmune liver diseases. The results of ERN RARE-LIVER online survey.


Journal

Liver international : official journal of the International Association for the Study of the Liver
ISSN: 1478-3231
Titre abrégé: Liver Int
Pays: United States
ID NLM: 101160857

Informations de publication

Date de publication:
Feb 2023
Historique:
revised: 13 09 2022
received: 22 06 2022
accepted: 19 09 2022
pubmed: 1 10 2022
medline: 25 1 2023
entrez: 30 9 2022
Statut: ppublish

Résumé

Autoimmune liver diseases (AILDs) are associated with impaired health-related 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. A cross-sectional 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-5D-5L and EQ visual analogue scale (EQ-VAS) and analysed in relation to demographic, psychosocial, disease- and treatment-related factors. A Patient Health Questionnaire-2 score >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. A group of 1178 European patients (79% female, mean age 48 ± 14 years) participated in the study. HrQoL was impaired in all three diseases (mean EQ-5D-5L = 0.75, mean EQ VAS = 68.9), most markedly in PBC (mean EQ-5D-5L = 0.73, mean EQ-VAS = 66.2). 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-physician relationships contributed to treatment confidence. Treatment confidence is a relevant modifiable determinant of HrQoL and should be further investigated to improve the standards of care for patients with AILDs.

Sections du résumé

BACKGROUND AND AIMS OBJECTIVE
Autoimmune liver diseases (AILDs) are associated with impaired health-related 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.
METHODS METHODS
A cross-sectional 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-5D-5L and EQ visual analogue scale (EQ-VAS) and analysed in relation to demographic, psychosocial, disease- and treatment-related factors. A Patient Health Questionnaire-2 score >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.
RESULTS RESULTS
A group of 1178 European patients (79% female, mean age 48 ± 14 years) participated in the study. HrQoL was impaired in all three diseases (mean EQ-5D-5L = 0.75, mean EQ VAS = 68.9), most markedly in PBC (mean EQ-5D-5L = 0.73, mean EQ-VAS = 66.2). 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-physician relationships contributed to treatment confidence.
CONCLUSION CONCLUSIONS
Treatment confidence is a relevant modifiable determinant of HrQoL and should be further investigated to improve the standards of care for patients with AILDs.

Identifiants

pubmed: 36177700
doi: 10.1111/liv.15440
pmc: PMC10091761
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

381-392

Subventions

Organisme : Consumers, Health, Agriculture and Food Executive Agency
ID : 869229

Informations de copyright

© 2022 The Authors. Liver International published by John Wiley & Sons Ltd.

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Auteurs

Ewa Wunsch (E)

Translational Medicine Group, Pomeranian Medical University in Szczecin, Szczecin, Poland.
RARE-LIVER European Reference Network.

Linda Krause (L)

Institute of Medical Biometry and Epidemiology, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany.

Tom Jg Gevers (TJ)

RARE-LIVER European Reference Network.
Division of Gastroenterology and Hepatology, Department of Internal Medicine, Maastricht University Medical Center+, Maastricht, The Netherlands.

Christoph Schramm (C)

RARE-LIVER European Reference Network.
Department of Medicine and Martin Zeitz Centre for Rare Diseases, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany.
Hamburg Center for Translational Immunology (HCTI), Hamburg, Germany.

Maciej K Janik (MK)

RARE-LIVER European Reference Network.
Liver and Internal Medicine Unit, Medical University of Warsaw, Warsaw, Poland.

Marcin Krawczyk (M)

RARE-LIVER European Reference Network.
Department of Medicine II, Saarland University Medical Center, Homburg, Germany.
Laboratory of Metabolic Liver Diseases, Department of General, Transplant and Liver Surgery, Medical University of Warsaw, Warsaw, Poland.

José Willemse (J)

RARE-LIVER European Reference Network.
Dutch Liver Patients Association, Hoogland, The Netherlands.

Natalie Uhlenbusch (N)

RARE-LIVER European Reference Network.
Department of Psychosomatic Medicine and Psychotherapy, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.

Bernd Löwe (B)

RARE-LIVER European Reference Network.
Department of Psychosomatic Medicine and Psychotherapy, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.

Ansgar Wilhelm Lohse (AW)

RARE-LIVER European Reference Network.
Department of Medicine, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany.

Piotr Milkiewicz (P)

Translational Medicine Group, Pomeranian Medical University in Szczecin, Szczecin, Poland.
RARE-LIVER European Reference Network.
Liver and Internal Medicine Unit, Medical University of Warsaw, Warsaw, Poland.

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