BetaEntity Annotation Prototype
← Back to diseases

Annotated abstract

P43 Overcoming hurdles in early detection of primary biliary cholangitis (PBC) in NHS grampian

gutjnl · 2025-10-06 · canonical JSON source

8 visible annotations · policy: published · automated confidence ≥ 75.00%

Document resource

Primary Biliary Cholangitis (PBC) is a chronic autoimmune, cholestatic liver disease diagnosed through anti-mitochondrial antibody (AMA) testing. Patients from Aberdeen City, Aberdeenshire, Orkney and Shetland are referred to Aberdeen Royal Infirmary, with NHS Grampian’s Immunology lab processing all samples. Limited data exists on referral processes for newly diagnosed PBC cases, raising concerns about missed referrals. This retrospective study evaluates the referral pathways for AMA-positive patients from 2024 to identify inconsistencies in access to specialist care.AMA-positive laboratory results from 2024 were analysed with Caldicott-approved patient record access. Newly diagnosed PBC cases were identified based on patients with cholestatic liver tests and AMA titres > 1:40. The study primarily focused on referral processes and identifying missed referrals to hepatology services. As these cases were new to NHS Grampian, annual PBC incidence estimates were extrapolated.A total of 91 patients were identified as AMA-positive in 2024. Among them, 25 were previously diagnosed PBC cases, while 66 were newly identified AMA-positive patients including 7 with low, non-significant AMA titres. Referral sources varied as 53 AMA-positive tests were requested by primary care physicians (GPs), while 13 tests originated from secondary and tertiary care settings, primarily hospital physicians. Referral sources varied, with 53 tests requested by GPs and 13 by hospital physicians. Among 59 newly classified PBC cases, referral discrepancies emerged. Six patients (10.2%) received no tertiary referral, while 3 (5.1%) remained on waiting lists. However, 50 patients (84.7%) had hepatology consultations, showing general adherence to referral pathways, despite inefficiencies. All missed patients were urgently reviewed.The estimated PBC incidence rate in NHS Grampian was 9.4 per 100,000, significantly higher than the UK-wide estimate of 2–3 per 100,000, based on NHS Grampian’s 2022 population of 628,382. Notably, all newly diagnosed PBC cases were over 40, contrasting national data where 75% are above 40. Additionally, gender distribution slightly varied, with 85% female cases versus the UK average of 90%.This study only includes patients who were tested for AMA as part of liver screen, possibly underestimating undiagnosed cases. Referral inconsistencies may have affected access to specialist care and patient outcomes. NHS Grampian’s referral inefficiencies for new PBC cases highlight the need for improved processes. Distinct age and gender trends suggest regional variations and the possibility that early cases are getting missed. A 5-year look-back study has been approved to identify additional cases. Strengthening referral protocols and investigating genetic, environmental, and healthcare factors can enhance patient management.