We write to update you on further work conducted since the publication by Sivakumar et al 1 that assessed the quality of care for patients with primary biliary cholangitis (PBC) in the UK. This work was initiated following the publication of updated guidelines on PBC management by the British Society of Gastroenterology (BSG) in 2018.2 The pilot audit of 790 patients, from 11 National Health Service (NHS) hospitals in the UK, demonstrated significant shortcomings in carewith the majority of hospitals not meeting the recommended BSG audit standards. Notably, disparities were found in the optimal dosing of ursodeoxycholic acid (UDCA), risk stratification using UDCA response, assessment of clinical symptoms (pruritus and fatigue), bone density assessment and in the referral of high-risk patients for consideration of liver transplant.
In response to these findings, a steering committee was formed and in collaboration with the BSG, British Association for Study of the Liver (BASL) and the PBC foundation, the national ‘UK-PBC Audit’ was launched.
Data collection began via the REDcap platform in January 2021 with 154 NHS hospital boards across the four constituent countries of the UK invited to participate. Data have been returned from 120 hospitals to date with 90% of anticipated cases now uploaded from 8953 patients across the UK. Given the estimated 10 000 people living with PBC in the UK, a substantial proportion of cases have been captured by this collaborative work and it demonstrates the effectiveness of engaging trainees in large-scale projects.
Analysis of the data is underway and, in line with the findings of Sivakumar et al 1, preliminary results suggest significant shortfalls in delivery of PBC care in the UK. Specifically, underdosing of UDCA, identification of high-risk patients, initiating second line therapy and assessment and treatment of clinical symptoms remain suboptimal.
The full audit outcomes will be presented at the 2022 BASL Annual Meeting and the 2022 European Association for the Study of the Liver International Liver Congress. Centres that have completed their uploads have received a data summary to facilitate evaluation of local service provision. On a national level, this work will benchmark the current standard of PBC care in the UK. This can then be used to inform targeted improvements in the adherence to guideline standards to improve 'real-world' care and outcomes for patients living with PBC.
Footnotes
Twitter: @laura_eburke, @GwentLiverUnit
Collaborators: UK-PBC audit Steering Committee.
Contributors: LB drafted the letter. All other authors reviewed and contributed to revisions of the draft and are members of the UK-PBC audit steering committee.
Funding: The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests: None declared.
Provenance and peer review: Not commissioned; internally peer reviewed.
Ethics statements
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References
- 1. Sivakumar M, Gandhi A, Shakweh E, et al. Widespread gaps in the quality of care for primary biliary cholangitis in UK. Frontline Gastroenterol 2022;13:32–8. 10.1136/flgastro-2020-101713 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2. Hirschfield GM, Dyson JK, Alexander GJM, et al. The British Society of Gastroenterology/UK-PBC primary biliary cholangitis treatment and management guidelines. Gut 2018;67:1568–94. 10.1136/gutjnl-2017-315259 [DOI] [PMC free article] [PubMed] [Google Scholar]