Pediatric liver transplant candidates are a very vulnerable population. Despite the increasing numbers of pediatric liver transplants over the last several years, there are still children who die every year waiting for a lifesaving transplant. Unfortunately, Black and Hispanic children who are awaiting liver transplantation may face disparities during the pediatric transplant process. They often spend more time on the transplant waiting list waiting for a liver transplant, which increases their risk of morbidity and mortality.
Peace Dike, MD, a pediatric transplant hepatologist and gastroenterologist at Stanford Medicine Children’s Health, discusses why these disparities exist and how she is working to address them.
What led you to the field of gastroenterology and liver transplant?
One of the core values in hepatology, and especially in transplant hepatology, is healing. You see, especially in liver transplants, the miraculous nature of human connection and healing. With one surgery, kids who receive liver transplants go from being some of the sickest in the hospital to rapidly recovering, so that drew me to it.
What are the disparities that liver transplant patients of color face?
Pediatric liver transplant candidates are an especially vulnerable population. Across the country, children die on the waitlist every year. The last few decades of liver transplant data show worrying differences in how children move through the transplant process, as well as gaps in outcomes, especially affecting Black and Hispanic children. We can’t have that. As a transplant community, we are working to change that so all children receive an equitable opportunity to liver transplantation and that no child will die waiting for a liver transplant.
The transplant process begins with a referral to a liver transplant center. Then, a child is evaluated by the transplant center team, and, if deemed an appropriate liver transplant candidate, they are added to the transplant waitlist with a score that should reflect their medical acuity. To expedite receiving a liver transplant, physicians utilize “exception scores,” which is a process where the physician writes to a committee on behalf of a candidate to petition for a higher waitlist score. Also, using a living donor who donates a portion of their liver is another means for children awaiting liver transplants to gain access to transplantation faster. However, Black and Hispanic children not only tend to be sicker at the time of referral and entry to the waitlist, which may have consequences on their overall outcomes before and after transplantation, but there are trends toward lower utilization of exception scores and living donor transplants. This increases their risks for prolonged wait times and ultimately getting sicker or even dying on the waitlist.
What is the origin of these disparities?
That’s the big question and the crux of my research to try and understand the drivers of inequities in our transplant process and work towards collaborative solutions to dismantle them. I believe in understanding racial inequities within a system; we must first understand the historical and present role of structural and institutional racism within our health care system, to develop effective interventions.
What are we doing here at Stanford Children’s to address these inequities?
Stanford Medicine is leading key efforts, including funding research, like the MCHRI grant, which provides financial support to physicians like me to do equity research.
As a pediatric transplant community at Stanford Children’s, we hope to lead the way in creating a more equitable transplant system. The first step we are taking is to make our transplant process data transparent by the creation of a robust “equity dashboard” that tracks every child who enters our transplant center. We can track the pre-transplant process to ensure equity in how every child is moving through the process and hold ourselves accountable if we identify disparities.
Another essential component of my research is working collaboratively with our transplant families and our communities. It will allow us to better understand the individual and societal barriers that families of historically marginalized groups face, so that we can work together on creating the appropriate and most effective solutions.
What can the medical community do?
I think that it is our responsibility as a medical community to educate ourselves on the impact that racism—structural, institutional, and personal—has had on creating and perpetuating the racial inequities we observe today. Secondly, we need to spend more time listening to the lived experiences of our patients to understand not only their challenges but to understand and know their strengths. Ultimately, it is up to us to change our system if we want to achieve equity, and that means actively working towards addressing and dismantling racism and inequity at every level within our spheres of influence and collaboratively within and across health care institutions. By addressing these issues, we can start creating a more equitable system for pediatric liver transplant patients.
Learn more about the Pediatric Liver Transplant Program at Stanford Children’s >
Authors
- Katie Chen
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