Pediatric liver transplant candidates are a highly vulnerable population. Although the number of pediatric liver transplants has increased over the past few years, there are still children who die each year while waiting for a life-saving transplant. Unfortunately, Black and Hispanic children awaiting a liver transplant may face inequities in the pediatric transplant journey. They spend longer on transplant waiting lists awaiting a liver transplant and are at higher risk for morbidity and mortality.
Peace Dyke, MarylandPediatrics Transplant Hepatologist and Gastroenterologist in Stanford University School of Medicine, Department of Child Health Sciencestalks about why these disparities exist and how they are being addressed.
What led you to the field of gastroenterology and liver transplantation?
One of the core values in hepatology, and liver transplantation in particular, is healing. In liver transplantation in particular, you see the human connection and the miraculous nature of healing. Children who receive liver transplants go from being the sickest in the hospital to being in a rapid recovery state in one operation. That's what attracted me to this field.
What are the inequities faced by liver transplant patients of color?
Pediatric liver transplant candidates are a particularly vulnerable population. Nationwide, children die each year while on the waiting list. Liver transplant data from the past few decades have shown worrying differences in how children navigate the transplant process and disparities in outcomes, particularly affecting Black and Hispanic children. We cannot allow this to happen. As the transplant community, we are working to change this so that all children have an equal opportunity to receive a liver transplant and no child dies while waiting for a liver transplant.
The transplant process begins with a referral to a liver transplant center. The child is then evaluated by the transplant center team, and if deemed a suitable liver transplant candidate, he or she is placed on a transplant waiting list with a score reflecting medical urgency. To expedite liver transplants, doctors use “exception scores,” a process in which doctors write letters to the committee on behalf of candidates, petitioning for a higher waitlist score. Using living donors to donate parts of their livers is another way to help children waiting for a liver transplant receive one sooner. However, black and Hispanic children tend to be sicker at the time of referral and waiting list entry, which can affect their overall outcomes before and after transplant, as well as lower exception scores and utilization of living donor transplants. This increases wait times and ultimately increases the risk of illness and death on the waiting list.
What causes these disparities?
This is the big question of my research and the crux of my work: understanding the causes of inequities in the transplant process and working toward collaborative solutions to eliminate them. I believe it is important to understand racial inequities within the system. To develop effective interventions, we must first understand the historical and current role of structural and institutional racism within the health care system.
What is Stanford Children's Hospital doing to address these inequities?
Stanford University School of Medicine is leading important efforts including funding research into: MCHRI Grantsprovides financial assistance for doctors like me to do equity research.
As the pediatric transplant community at Stanford Children's Hospital, we want to lead the way in creating a more equitable transplant system. The first step we are taking is to create a robust “equity dashboard” that tracks every child admitted to our transplant center and makes the data on the transplant process transparent. We will track the pre-transplant process to ensure fairness in how every child moves through the process and hold them accountable if we find discrepancies.
Another key component of my research is working with transplant families and communities, which allows me to better understand the personal and social barriers faced by families from historically marginalized groups and to co-create the most effective solutions that are appropriate.
What can the medical community do?
I believe it is our responsibility as a medical community to educate ourselves about the impacts that structural, institutional, and personal racism have had in creating and perpetuating the racial inequities we see today. Second, we need to listen more to our patients’ lived experiences and understand and know their strengths, not just their challenges. Ultimately, if we want to achieve equity, it is up to us to change the system, and that means working proactively within our spheres of influence and collaboratively within and outside of our medical institutions to address and dismantle racism and inequities at all levels. By addressing these issues, we can begin to create a more equitable system for pediatric liver transplant patients.
Learn more about Stanford Children's Hospital's pediatric liver transplant program >