Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2025 Feb 19.
doi: 10.1097/HEP.0000000000001271. Online ahead of print.

Health-related quality of life is impaired in people with autoimmune hepatitis: Results of a multicentre cross-sectional study within the European Reference Network

Romée J A L M Snijders  1   2 , Maciej K Janik  3   2 , Meike Mund  4 , Natalie Uhlenbusch  5 , Joanna Raszeja-Wyszomirska  3   2 , Alessio Gerussi  6   7   2 , Francesca Bolis  6   7   2 , Laura Cristoferi  6   7   2 , Pietro Invernizzi  6   7   2 , Patricia Kovats  8   9   2 , Mária Papp  8   2 , Lisbet Grønbæk  10   11   2 , Henning Grønbæk  10   2 , Eric T T L Tjwa  1 , Luise Aamann  12   2 , Henriette Ytting  12   13   2 , Vincenzo Ronca  14   2 , Kathryn Olsen  14   2 , Ye H Oo  14   2 , Adriaan J van der Meer  15   2 , João Madaleno  16   17   18   2 , Bernardo Canhão  16   19 , Bastian Engel  20   2 , Alejandro Campos-Murguia  20   2 , Richard Taubert  20   2 , Özgür M Koc  21   2 , Matthijs Kramer  21   22   2 , José A Willemse  23   2 , Bernd Löwe  5   2 , Ansgar W Lohse  24   2 , Joost P H Drenth  1   2 , Christoph Schramm  4   24   2 , Piotr Milkiewicz  3   25   2 , Tom J Gevers  21   19   2
Affiliations

Health-related quality of life is impaired in people with autoimmune hepatitis: Results of a multicentre cross-sectional study within the European Reference Network

Romée J A L M Snijders et al. Hepatology. .

Abstract

Background and aims: Impaired health-related quality of life (HRQoL) contributes to the overall disease burden in autoimmune hepatitis (AIH). This study aimed to evaluate HRQoL in people with AIH and to identify potentially modifiable factors associated with impaired HRQoL using validated patient-reported outcome measures.

Approach and results: Adult patients with AIH diagnosed at 12 European centers were enrolled in this prospective, cross-sectional study from July 2020 to June 2023. HRQoL was assessed using the Physical Component Score (PCS) and Mental Component Score (MCS) of the 12-item Short Form Health Survey (SF-12), and the European Quality-of-life 5-Dimension 5-Level (EQ-5D-5L) utility index score. Mixed-model regression analyses identified factors associated with HRQoL and somatic symptom severity. Controls were recruited from the general population in 5 European countries. A total of 882 patients with AIH (mean age: 51.0 y [SD: 17.0]; 76.4% female) and 178 controls were included. Physical but not mental HRQoL was impaired in the AIH group compared with the control group (PCS: 46.3 vs. 51.9, p <0.001; EQ-5D utility index score: 0.87 vs. 0.95, p <0.001). HRQoL was associated with severe somatic symptoms (PCS: β=-4.26, p <0.001), fatigue (PCS: β=-0.25, p <0.001; MCS: β=-0.25, p <0.001), and depression/anxiety (PCS: β=-3.37, p <0.001; MCS: β=-6.79, p <0.001). A complete biochemical response was associated with lower somatic symptom severity (OR: 0.69, p <0.05).

Conclusions: People with AIH had impaired HRQoL compared with controls, particularly in terms of physical well-being. HRQoL scores are associated with symptom burden, encompassing both somatic and psychosocial dimensions.

Keywords: anxiety; autoimmune hepatitis; complete biochemical response; depression; mental health; physical health; quality of life; somatic symptom burden; symptoms.

PubMed Disclaimer

References

    1. European Association for the Study of the L. EASL Clinical Practice Guidelines: Autoimmune hepatitis. J Hepatol. 2015;63:971–1004.
    1. Muratori L, Lohse AW, Lenzi M. Diagnosis and management of autoimmune hepatitis. BMJ. 2023;380:e070201.
    1. Manns MP, Czaja AJ, Gorham JD, Krawitt EL, Mieli-Vergani G, Vergani D, et al; American Association for the Study of Liver D. Diagnosis and management of autoimmune hepatitis. Hepatology. 2010;51:2193–2213.
    1. Depping MK, Uhlenbusch N, von Kodolitsch Y, Klose HFE, Mautner VF, Lowe B. Supportive care needs of patients with rare chronic diseases: Multi-method, cross-sectional study. Orphanet J Rare Dis. 2021;16:44.
    1. Snijders R, Assis DN, Oo YH, Sebode M, Taubert R, Willemse J, et al. Research gaps and opportunities in autoimmune hepatitis—Results of the international autoimmune hepatitis group research workshop 2022. Liver Int. 2023;43:1375–1384.

LinkOut - more resources