Critical shortfalls in the management of PBC: Results of a UK-wide, population-based evaluation of care delivery
Nadir Abbas, Rachel A. Smith, Steven Flack, Vikram Bains, Richard Aspinall, Rebecca Jones, Laura Burke, Douglas Thorburn, Michael A. Heneghan, Andrew D. Yeoman, Joanna Leithead, Conor Braniff, Andrew Robertson, Thomas J. Mitchell, Collette Thain, Robert Mitchell-Thain, David Jones, Palak Trivedi, George Mells, Laith Alrubaiy
Abstract
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: <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.