Acute-on-chronic liver failure (ACLF) is a clinical entity defined by organ failures and high short-term mortality rates. However, unlike other diseases that are defined by histology or serology, ACLF was first defined based on the requirement of a high 28-day mortality rate using a predefined threshold. (1) Despite multiple definitions of ACLF, all require a combination of laboratory and clinical data (eg, prior decompensations), some of which are only available in the medical record. There have been a series of publications using US transplantation registry data from the United Network for Organ Sharing (UNOS) to advocate for changes in transplantation policy for patients with ACLF. (2) In this editorial, we discuss the barriers to using transplantation registry data to study ACLF.
aBilitY to USE UNoS data to StUdY aClFUNOS data are submitted by transplantation centers and organ procurement organizations to place patients on the waiting list, match donors and recipients, and monitor posttransplantation outcomes. Their use as a research database is secondary. ACLF studies using the UNOS registry have most commonly relied on the European (European Association for the Study of the Liver-Chronic Liver Failure [EASL-CLIF]) and/or North American (North American Consortium for the Study of End-Stage Liver Disease [NACSELD]) criteria. Importantly, both criteria require the presence of acutely decompensated cirrhosis and organ failures. (3,4)
Acutely Decompensated CirrhosisUNOS only includes data on 2 decompensations, ascites and hepatic encephalopathy (HE), at waitlisting and transplantation. With respect to patients who are "acutely decompensated," UNOS only collects data on the presence/absence and severity, without consideration of timing (ie, acute decompensation versus chronic condition).
Organ FailuresEASL-CLIF criteria include hepatic and extrahepatic organ failures in the classified and staged ACLF grades, whereas NACSELD criteria are based only on extrahepatic organ failures (Table 1). Of the 6 EASL-CLIF organ failures, 3 (liver, renal, and coagulation)