{
  "abstract": "Background Primary biliary cholangitis (PBC) is a chronic cholestatic liver disease marked by progressive destruction of intrahepatic bile ducts. Persistent elevation in alkaline phosphatase (ALP) is typically the first biochemical indicator, with detection of anti-mitochondrial antibodies (AMA-M2) or other disease-specific autoantibodies sufficient for diagnosis in most cases. Prompt recognition and investigation of raised ALP are key to early diagnosis and treatment, which may delay disease progression and improve outcomes. This audit of real-world data from a large UK NHS Trust aimed to assess the interval between first recorded ALP elevation and diagnosis in a PBC cohort, to identify diagnostic delays and inform potential improvements in clinical pathways.Methods A retrospective review of 198 patients with confirmed diagnosis of PBC was conducted across Frimley Health Foundation Trust from 2008 to 2025. The audit examined the time from initial persistent ALP elevation (>130 U/L) to AMA testing. Demographic data and liver stiffness measurements (FibroScan) at diagnosis were also collected. Complete data were available for 84 patients.Results Among the 84 patients with AMA-M2 positive PBC, 90.6% were female, with a mean age of 60.8 years. The median time from initial ALP elevation to AMA testing was 114 weeks ( Range 6 – 577 weeks). In a subgroup of 30 patients with ALP >250 U/L at first elevation, the median delay increased to 178 weeks (range 15 – 577 weeks). FibroScan data were available in 62 cases. Patients with liver stiffness >10 kPa (n = 21) experienced a median delay of 200 weeks (range 6 – 547 weeks). compared to 150.5 weeks (range 15 – 577 weeks) in those with <10 kPa (n = 41).Conclusion This real-world audit reveals significant delays, often exceeding two years, between the first biochemical evidence of cholestasis and AMA testing. Interestingly, patients with more marked cholestasis (ALP >250 U/L) experienced longer diagnostic delays, suggesting that biochemical severity alone does not reliably prompt timely action in clinical practice.Patients with more advanced liver stiffness at diagnosis experienced longer delays, underscoring the potential consequences of late investigation. These findings highlight the need for improved awareness and earlier workup of persistent ALP elevation, particularly in primary care settings, to facilitate timely diagnosis and intervention in PBC.Implementing automated alerts for persistently raised ALP, reflex testing and hepatology referral pathways could support earlier diagnosis and treatment, helping to reduce progression to cirrhosis or the need for transplantation.",
  "authors": [
    {
      "affiliations": [
        "Frimley Health Trust, Surrey, UK"
      ],
      "name": "Parmis Vafapour"
    },
    {
      "affiliations": [
        "Frimley Health Trust, Surrey, UK"
      ],
      "name": "Molly Butler"
    },
    {
      "affiliations": [
        "Frimley Health Trust, Surrey, UK"
      ],
      "name": "Kira Mattison"
    },
    {
      "affiliations": [
        "Frimley Health Trust, Surrey, UK"
      ],
      "name": "Nauman Nauman"
    },
    {
      "affiliations": [
        "Frimley Health Trust, Surrey, UK"
      ],
      "name": "Alfredo Lim"
    },
    {
      "affiliations": [
        "Frimley Health Trust, Surrey, UK"
      ],
      "name": "Valerie Duckhouse"
    },
    {
      "affiliations": [
        "Frimley Health Trust, Surrey, UK"
      ],
      "name": "Liliana Goncalves-King"
    },
    {
      "affiliations": [
        "Frimley Health Trust, Surrey, UK"
      ],
      "name": "Iona Coltart"
    },
    {
      "affiliations": [
        "Frimley Health Trust, Surrey, UK"
      ],
      "name": "Christopher Wong"
    },
    {
      "affiliations": [
        "Frimley Health Trust, Surrey, UK"
      ],
      "name": "Kuldeep Cheent"
    }
  ],
  "title": "P50 Real-world delays in primary biliary cholangitis diagnosis: a 17-year retrospective audit of time from ALP elevation to diagnosis",
  "uid": "54d76b0e-f7fa-584f-88ba-e441ce46f4b5"
}