Outcomes in patients with cirrhosis evaluated through routine healthcare data

Background: Mortality from liver disease is rising. Recent efforts have been focussed on early detection and prevention of disease progression. Transient elastography (TE) is commonly used in clinical practice to diagnose fibrosis and is an accurate predictor of mortality, decompensation, and hepatocellular carcinoma (HCC). Electronic health records (EHR) have been used to observe ‘real world’ data in large cohorts of patients with liver disease. Method: EHR data was used to observe outcomes in patients with advanced fibrosis. This included a systematic review followed by synthesis and validation of a code set to identify cirrhosis and complications in EHR data. Data extracted from EHR was used to assess survival and competing risk of liver and non-liver related events in a cohort of patients with advanced chronic liver disease defined by TE. Data was analysed to examine patterns of screening and surveillance for complications of cirrhosis in accordance with current practice guidelines. Results: The developed consensus code set showed improved performance characteristics for identifying cirrhosis in comparison to previously used codes. In the analysis of over 3000 patients with advanced fibrosis, liver stiffness was associated with the development of varices, the transition from compensated cirrhosis to decompensated cirrhosis, and the development of hepatocellular carcinoma. Only a minority of patients had undergone the recommended surveillance interventions. Conclusion: Electronic health databases can be used to evaluate screening and surveillance strategies, and to accurately define clinical progression and outcomes in large patient cohorts and estimates of disease progression in EHR cohorts are comparable to landmark studies of patients diagnosed using liver vi biopsy. Transient elastography is strongly associated with outcomes in patients with advanced fibrosis. This study highlights the utility of EHR data in contemporary research practice in cirrhosis, highlighting the potential for a registry to impact on patient care and to improve outcomes for patients with cirrhosis.