Widespread gaps in the quality of care for primary biliary cholangitis in UK

Abstract

ObjectivePrimary biliary cholangitis (PBC) is a progressive, autoimmune, cholestatic liver disease affecting approximately 15 000 individuals in the UK. Updated guidelines for the management of PBC were published by The European Association for the Study of the Liver (EASL) in 2017. We report on the first national, pilot audit that assesses the quality of care and adherence to guidelines.DesignData were collected from 11 National Health Service hospitals in England, Wales and Scotland between 2017 and 2020. Data on patient demographics, ursodeoxycholic acid (UDCA) dosing and key guideline recommendations were captured from medical records. Results from each hospital were evaluated for target achievement and underwent χ2 analysis for variation in performance between trusts.Results790 patients’ medical records were reviewed. The data demonstrated that the majority of hospitals did not meet all of the recommended EASL standards. Standards with the lowest likelihood of being met were identified as optimal UDCA dosing, assessment of bone density and assessment of clinical symptoms (pruritus and fatigue). Significant variations in meeting these three standards were observed across UK, in addition to assessment of biochemical response to UDCA (all p<0.0001) and assessment of transplant eligibility in high-risk patients (p=0.0297).ConclusionOur findings identify a broad-based deficiency in ‘real-world’ PBC care, suggesting the need for an intervention to improve guideline adherence, ultimately improving patient outcomes. We developed the PBC Review tool and recommend its incorporation into clinical practice. As the first audit of its kind, it will be used to inform a future wide-scale reaudit.

The National Audit of Primary Biliary Cholangitis (PBC) in the United Kingdom: Defining the Audit Dataset and Data Collection System

“…Updated guidelines for managing patients with PBC were published in 2018 by the British Society of Gastroenterology (BSG) in collaboration with UK-PBC [ 1 ]. A recent study showed that the care for PBC had not fulfilled all the recommended standards [ 9 ]. Of concern, the study found significant geographical variation in optimal prescribing of UDCA; risk stratification using the UDCA response; risk assessment for osteoporotic fracture; assessment of the symptoms, pruritus, and fatigue; and referral of high-risk patients for LT [ 9 ].…”

“…Following the publication of the BSG guidelines, we conducted a pilot audit of the management of PBC in 11 National Health Service (NHS) trusts or health boards in England, Wales, and Scotland [ 9 ]. We reviewed data from 790 patients with PBC and found that most participating centers had not fulfilled all the recommended standards.…”

“…We reviewed data from 790 patients with PBC and found that most participating centers had not fulfilled all the recommended standards. Notably, we found significant variation in optimal prescribing of UDCA; risk stratification using the UDCA response; risk assessment for osteoporotic fracture; assessment of the symptoms, pruritus and fatigue; and referral of high-risk patients for LT [ 9 ].…”

Setting Up a Local Registry to Improve the Care of Patients With Primary Biliary Cholangitis

“…A recent study has shown gaps in the quality of care delivered to patients with PBC [ 11 ]. Several factors may affect the delivery of optimal treatment to patients with PBC.…”

“…Most specialist hepatologists are clustered at liver transplant centres and tertiary hospitals [ 12 ]. Therefore, the majority of patients with PBC are managed by primary care physicians, general gastroenterologists, or acute medical physicians [ 11 ].…”