Screening for oesohpageal varices and surveillance for hepatocellular carcinoma (HCC) are recommended to improve outcomes for patients with cirrhosis. The adherence with the recommendations is unknown. Disease registries have improved care for patients with heart diease and inflammatory bowel disease. To date there is no registry for patients with cirrhosis. The aim of this study was to determine if information routinely collected in electronic health records (EHR) can be used to evaluate rates of surveillance testing in patients with advanced chronic liver disease (ACLD).Method
Transient elastography (TE) data was collected from St James’s University Hospital in Leeds between 2012 and 2017. Inclusion criteria were a valid liver stiffness measurement (LSM) ≥10 kPa to identify patients likely to have ACLD. Disease and procedural coding information sent to NHSDigital and held in EHR was used to determine the number of patients who underwent screening or surveillance. For the purposes of the analysis variceal screening was defined as a gastroscopy within 12 months of TE and HCC surveillance was at least one abdominal ultrasound scan (USS) with a mean interval between scans of 2–9 months during the follow-up period. Patients were stratified based on LSM into two groups:≥10–15 kPa or >15 kPa. Validation of the coding information was done in a subset of patients where the full clinical record was reviewed to determine the accuracy of the coded EHR data.Results
1046 patients underwent TE (Median LSM 16.2 kPa; 489≥10–15 kPa, 557>15 kPa). Median follow-up interval was 36 months. Considering only those patients with LSM >15 kPa, 166 (30%) patients had a gastroscopy within 12 months. Of these, 44/166 (27%) patients had a ICD-10 primary diagnosis code for oesophageal varices. Using the primary diagnosis code to determine the presence or absence of varices was validated in 100 patients and showed good performance characteristics: sensitivity 0.91; specificity 0.88. Regarding HCC surveillance, 647/1046 patients (62%) had undergone at least one USS. 45/489 patients (9.2%) with a LSM ≥10–15 kPa and 124/557 patients (22.3%) with a LSM >15 kPa were identified as having regular surveillance for HCC.Conclusions
This study shows that information routinely collected in EHR can be used to evaluate screening and surveillance strategies in patients with cirrhosis. Only a minority of patients had undergone the recommended interventions within the definitions of this study. This highlights the potential for a cirrhosis registry to impact on patient care and to improve outcomes for patients with cirrhosis.