The UK-PBC audit is a collaborative project sanctioned by the British Association for the Study of the Liver (BASL), the British Society of Gastroenterology (BSG), UK-PBC and the PBC Foundation, established to benchmark current management of primary biliary cholangitis (PBC) in the UK National Health Service (NHS) against the BSG audit standards published in 2018.
All NHS trusts and health boards were invited to participate in the audit. From January 2021 to April 2022, participating centres collected retrospective patient data using a bespoke audit tool on the REDCap (Research Electronic Data Capture) platform.
Data were collected about 8937 patients from 122 NHS trusts and health boards across the UK. Most of the audited population were female (88.9%) and aged 50 to 79 (78.0%). In total, 7864 of 8937 (88.0%) patients received ursodeoxycholic acid (UDCA) as first-line therapy. The dose of UDCA was sub-optimal (less than 13 mg/kg/day) in 30.6% of cases, with more patients under-dosed in Operational Delivery Network (ODN) spokes (33.8%) compared to hubs (25.7%). Overall, 2618 patients were identified as high-risk. Of these, only 1293 (49.4%) received second-line treatment (SLT). The proportion of high-risk patients on SLT was greater in ODN hubs (70.5%) compared to spokes (26.5%). There was no significant variation in the prescribing of SLT in England (48.5%) and Wales (50.0%) compared to Scotland (53.7%). 259 patients below the age of 70 had evidence of end-stage liver disease (ESLD); 166 (64.1%) were discussed with a transplant centre. A greater number of ESLD patients were discussed with transplant centres in England (66.2%) and Scotland (65.6%) compared to Wales (18.0%). In England, a greater proportion of ESLD patients had been discussed with transplant centres in ODN hubs (76.1%) compared to spokes (56.1%). There was also regional variation, with a greater proportion of ESLD patients discussed in North East England (100%) compared to the North West (30.4%).
We have demonstrated significant variation in key aspects of PBC management across the UK. Shortfalls in the referral of high-risk patients for SLT, and ESLD patients for liver transplantation, mean that eligible patients are left without effective treatment. Possible solutions, such as the development of a PBC care bundle, will address these critical deficits, and its dissemination throughout the UK will be vital in improving the delivery of PBC-related healthcare.
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