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Lookup NU author(s): Professor David Jones, Dr George Mells
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
© 2023 The Author(s)Background & Aims: Guidelines for the management of primary biliary cholangitis (PBC) were published by the British Society of Gastroenterology in 2018. In this study, we assessed adherence to these guidelines in the UK National Health Service (NHS). Methods: All NHS acute trusts were invited to contribute data between 1 January 2021 and 31 March 2022, assessing clinical care delivered to patients with PBC in the UK. Results: We obtained data for 8,968 patients with PBC and identified substantial gaps in care across all guideline domains. Ursodeoxycholic acid (UDCA) was used as first-line treatment in 88% of patients (n = 7,864) but was under-dosed in one-third (n = 1,964). Twenty percent of patients who were UDCA-untreated (202/998) and 50% of patients with inadequate UDCA response (1,074/2,102) received second-line treatment. More than one-third of patients were not assessed for fatigue (43%; n = 3,885) or pruritus (38%; n = 3,415) in the previous 2 years. Fifty percent of all patients with evidence of hepatic decompensation were discussed with a liver transplant centre (222/443). Appropriate use of second-line treatment and referral for liver transplantation was significantly better in specialist PBC treatment centres compared with non-specialist centres (p <0.001). Conclusions: Poor adherence to guidelines exists across all domains of PBC care in the NHS. Although specialist PBC treatment centres had greater adherence to guidelines, no single centre met all quality standards. Nationwide improvement in the delivery of PBC-related healthcare is required. Impact and implications: This population-based evaluation of primary biliary cholangitis, spanning four nations of the UK, highlights critical shortfalls in care delivery when measured across all guideline domains. These include the use of liver biopsy in diagnosis; referral practice for second-line treatment and/or liver transplant assessment; and the evaluation of symptoms, extrahepatic manifestations, and complications of cirrhosis. The authors therefore propose implementation of a dedicated primary biliary cholangitis care bundle that aims to minimise heterogeneity in clinical practice and maximise adherence to key guideline standards.
Author(s): Abbas N, Smith R, Flack S, Bains V, Aspinall RJ, Jones RL, Burke L, Thorburn D, Heneghan M, Yeoman A, Leithead J, Braniff C, Robertson A, Mitchell C, Thain C, Mitchell-Thain R, Jones D, Trivedi PJ, Mells GF, Alrubaiy L
Publication type: Article
Publication status: Published
Journal: JHEP Reports
Year: 2024
Volume: 6
Issue: 1
Print publication date: 01/01/2024
Online publication date: 15/10/2023
Acceptance date: 15/09/2023
Date deposited: 17/09/2024
ISSN (electronic): 2589-5559
Publisher: Elsevier B.V.
URL: https://doi.org/10.1016/j.jhepr.2023.100931
DOI: 10.1016/j.jhepr.2023.100931
Data Access Statement: Aggregate data that support the findings of this study are available on request from any of the corresponding authors.
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