New project to reduce racial inequities in kidney transplants
Kidney disease is one of the top ten leading causes of death in the U.S., with diagnoses rising almost 600 percent in the last 30 years. Kidney transplants by a living donor are often the most effective way of treating the disease, but for many, large racial disparities affect the likelihood of obtaining this life-saving treatment. A $1.2 million National Institute of Diabetes and Digestive and Kidney Diseases grant will fund a new, five-year Penn State project to investigate and reduce these racial disparities.
According to principal investigator Jonathan Daw, assistant professor of sociology and demography and Population Research Institute research associate, the project will look at the entire pool of potential donors in kidney transplant candidates’ networks, and the processes by which candidates and network members negotiate potential living donation.
Motivated by previous research showing that white transplant candidates were more than twice as likely to obtain a living donor kidney transplant, Daw and his research team conducted a pilot study. They surveyed 72 transplant candidates and collected over 1,600 reports from family members and social networks about their health and perceived willingness to become kidney donors. They found that, contrary to a common hypothesis, African Americans were more likely than whites to have access to promising potential donors.
However, Daw explained, “African Americans are more likely to need but less likely to receive. We theorize key barriers to eliminating racial disparities in living donation kidney transplantation and promoting it for all groups are primarily social, not biomedical, in origin. There is some disconnect with the social process and norms that prevent people from donating, and we are just beginning to understand the factors that get people to go to the hospital to be screened in the first place.”
This research is important because kidney disease a growing health challenge, as over 600,000 people experience kidney failure a year, and that number does not include those with kidney disease. “Dialysis is one treatment option, but it does not provide optimal health and over the long term is not sustainable. There are also numerous risks involved with dialysis, including infections and kidney failure, resulting in shortened lives,” Daw said.
Daw and his research team are trying to identify methods to help kidney transplant candidates efficiently identify and recruit healthy, well-matched, and willing living donors in their family and social networks. They plan to develop and test two interventions intended to assist candidates in their efforts to identify and recruit biomedically suitable, willing living kidney donors.
The team will first develop a search intervention tool to assign those in a candidate network a probability of being biomedically suitable donors for the candidate, which can be adjusted using candidate reports on health status and perceived willingness to donate. This tool will then be combined with social network data also collected in the study to calculate which members of a candidate’s network are most likely to be suitable donors, and advise candidates to initiate donation discussions with those individuals.
Next, they plan to use experimental survey studies to develop a series of verbal scripts that can be used by candidates with potential donors in their networks. “The scripts will help candidates initiating conversations with potential donors and ethically increase their effectiveness in discussing donation,” said Daw. “We’ll look at previous research to determine consistent themes that come up in these conversations and reasons why potential donors end up not donating in order to develop scripts that address these issues.”
To test these interventions, researchers will recruit new kidney transplant candidates from two large, racially diverse kidney transplant programs and survey them on their health status, views and knowledge about kidney transplantation. The researchers will also assist the candidates in mapping their social networks, focusing on health status and their relationship with the candidates.
In the last phase of the project, Daw and his team plan to follow-up with the candidates to measure key outcomes such as which candidates received a living donation kidney transplantation and how various factors worked together to map out a potential candidate network. “Building on this information, we will create the first predictive model to map out a potential donor pool,” said Daw. “This information is critical to improve clinical practice and efforts to ethically influence the living donor search process.”
Other Penn State researchers on the project are Ashton Verdery, assistant professor of sociology and demography; and Selena Ortiz, Gregory H. Wolf Professor of Health Policy and Administration, both research associates of the Population Research Institute, part of the Social Science Research Institute. Additional researchers include Peter Reese, associate professor of medicine, and Deirdre Sawinski, assistant professor of medicine, both at the University of Pennsylvania; and Robert Gaston, endowed professor of transplant nephrology at the University of Alabama-Birmingham.