Background
Primary biliary cholangitis (PBC) is a rare, autoimmune cholestatic liver disease that puts patients at risk of life-threatening complications. PBC is primarily a disease of women, affecting approximately one in 1,000 women over the age of 40.
With an estimated total prevalence in the UK of ~3.9 per 10,000 of the population, equating to around 19,175 people in England, the survival of PBC patients is significantly worse than the general population if left untreated.
Many patients are diagnosed after multiple acute care admissions, with tummy pain, jaundice or scarring of the liver. The diagnosis can still be missed here, putting patients at increased risk of liver complications and even death.
This dataset focuses on describing the demographic, clinical and laboratory characteristics of PBC patients.
PIONEER geography: The West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix.
EHR. UHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.
Scope: All patients from 2000 onwards, curated to focus on Primary Biliary Cholangitis (PBC). Longitudinal & individually linked, so that the preceding & subsequent health journey can be mapped & healthcare utilisation prior to & after admission understood. The dataset includes highly granular patient demographics, co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to process of care (admissions, wards and discharge outcomes), presenting complaints, all physiology readings (pulse, temperature, blood pressure, respiratory rates, oxygen saturations), all sample analysis results, all prescribed & administered treatments, along with chemotherapy data and all outcomes.