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Widespread gaps in the quality of care for primary biliary cholangitis in UK
Mathuri Sivakumar1,2, Akash Gandhi3, Eathar Shakweh4
1Medicine, University of Birmingham, Birmingham, UK.
Insights
This audit of primary biliary cholangitis (PBC) care in the UK found significant gaps in guideline adherence, particularly regarding optimal ursodeoxycholic acid (UDCA) dosing and patient symptom assessment. Improvements are needed to enhance real-world patient outcomes.
Area of Science:
- Hepatology
- Autoimmune Diseases
- Clinical Audit
Background:
- Primary biliary cholangitis (PBC) is a progressive autoimmune liver disease impacting ~15,000 individuals in the UK.
- The European Association for the Study of the Liver (EASL) published updated PBC management guidelines in 2017.
Purpose of the Study:
- To conduct the first national pilot audit assessing the quality of PBC care and adherence to EASL guidelines in the UK.
- To identify specific areas of suboptimal care and variations in practice.
Main Methods:
- A retrospective audit of 790 patient medical records from 11 NHS hospitals in England, Wales, and Scotland (2017-2020).
- Data collected included patient demographics, ursodeoxycholic acid (UDCA) dosing, and adherence to key guideline recommendations.
- Statistical analysis (chi-squared) was used to evaluate target achievement and identify variations in performance.
Main Results:
- The majority of hospitals failed to meet all recommended EASL standards for PBC care.
- Lowest adherence rates were observed for optimal UDCA dosing, bone density assessment, and assessment of clinical symptoms (pruritus, fatigue).
- Significant variations in adherence were noted across UK hospitals for UDCA biochemical response assessment and transplant eligibility assessment in high-risk patients (p<0.0001 and p=0.0297, respectively).
Conclusions:
- A widespread deficiency in real-world PBC care necessitates interventions to improve guideline adherence.
- The developed PBC Review tool is recommended for integration into clinical practice to enhance patient outcomes.
- This audit serves as a foundation for a future large-scale reaudit to monitor progress.
Objective:
Primary 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.
Design:
Data 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.
Results:
790 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).
Conclusion:
Our 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.
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