Previous research was falsely reassuring; captured only 2% of cirrhosis patients
Findings underscore lack of access to health care for Black patients
Cirrhosis is leading cause of death and affects more than 600,000 people in U.S.
CHICAGO --- Black patients with cirrhosis - late-stage liver disease - are about 25% more likely to die compared to non-Hispanic white patients and four times less likely to receive a liver transplant, reports a new Northwestern Medicine study.
Estimates of racial disparity in cirrhosis have been limited by a lack of large-scale longitudinal data, which track patients from diagnosis to death and/or transplant.
The paper is one of the first to link all seven large liver centers in Chicago with the death registry and transplant registry to examine racial disparities in cirrhosis on a population level. Previous surveillance of outcomes by race has been through the transplant registry alone, which only captures about 2% of those with cirrhosis, and therefore does not lend itself to understand the true disparity affecting patients with cirrhosis.
"The findings underscore broader societal issues of access to health care for our Black patients," said senior study author Dr. Daniela Ladner, professor of surgery at Northwestern University Feinberg School of Medicine and a Northwestern Medicine transplant surgeon. "We need to support our Black community to find the way to optimal care, including offering transplants at the same rate as all other patients."
The study did not examine the cause of the disparity, but other research has shown the reasons are a combination of structural (lack of resources such as medical specialists, pharmacies, transportation, safe housing) and institutional (policies and practices that disadvantage or prioritize certain groups over others).
The paper was published recently in Hepatology.
Cirrhosis is a common disease thought to affect more than 600,000 people in the U.S. and is a leading cause of death in adults. It is caused by chronic viral infections of the liver (hepatitis B and hepatitis c), fatty liver disease and alcohol use disorder.
Previous research has addressed the small group of patients who are listed for liver transplant (
"The findings from this study should prompt quality initiatives at each of the liver centers in this study to examine what barriers to care are contributing the most to the disparities we found," said co-lead author Dr. Nikhilesh Mazumder, a Northwestern Medicine transplant hepatology fellow. "Further research is needed to verify these results on a national level, so we can address this disparity nationwide."
One remedy, the authors said, is targeted interventions to facilitate health care access for Black patients such as the African American Transplant Access Program at Northwestern Medicine. This program is directed by transplant surgeon and co-lead author Dr. Dinee Simpson, assistant professor of surgery at Feinberg and a Northwestern Medicine transplant surgeon.
"We must recognize that health equity is not attainable for everyone if we treat them the same, because different groups face different barriers," Simpson said. "We must research the barriers our Black patients face and be willing to address them with creative solutions. This must happen at the institutional level and the structural level for better health to be realized in this community."
Among patients listed for liver transplants, there were no differences among patient outcomes, the study found.
It is also important to continue to study Black disparities to find the best solutions to resolve them, the authors said. Population-based cohorts such as the Chicago Area Patient-Centered Outcomes Research Network, spearheaded by co-author Dr. Abel Kho, that combine electronic health records from 10 health care systems, allow for these population-based studies.