Raising awareness about kidney health and transplants is goal of UB surgeon & her community partners
By the University at Buffalo
Of all the organs that can be transplanted, kidneys, by far, are the organ in greatest demand.
Kidney failure can take years to develop, but there are typically few symptoms until irreparable damage has been done.
The vast majority of those seeking a kidney transplant are on dialysis. That means that, several times a week, individuals must undergo the grueling procedure that does the work that kidneys would normally do, mechanically filtering excess water and waste from the blood.
Less than one-fifth of the 500,000 people in the U.S. currently on dialysis are on the transplant waiting list. And half of the 90,000 patients on the list will die without ever getting a transplant. That reality is all the more devastating in light of this single fact: After a transplant, life expectancy doubles.
As clinical professor of surgery in the Jacobs School of Medicine and Biomedical Sciences, chief of the division of transplant surgery and program director of the Regional Center of Excellence for Transplantation and Kidney Care at Erie County Medical Center, Liise Kayler, M.D., thinks about that fact every day. She has been laser-focused on how to get more people with end-stage kidney disease transplanted.
Since her arrival, the ECMC transplant program has dramatically improved; the program website states that its kidney transplant waiting times are now some of the shortest in the nation.
But like everyone who works in transplant medicine, Kayler, also a surgeon with UBMD Surgery, was keenly aware of the challenges and cruel ironies that plague kidney transplantation in general. Chief among these is the fact that Black Americans are more than three times as likely as non-Black persons to experience kidney failure, but 25% less likely to undergo a transplant, the result of a combination of social and economic disparities.
Kayler saw there were opportunities to make significant improvements.
During the transplant workup period, a patient undergoes a series of medical tests to ensure they are a safe candidate for a transplant. Kayler hired more staff to expedite the requisite testing and standardized the testing so that, wherever possible, it was consistent for all patients.
Brian Murray, M.D., formerly chief medical officer at ECMC, currently interim chair of the department of medicine in the Jacobs School and a physician with UBMD Internal Medicine, said Kayler took a comprehensive approach to improving kidney transplant access for all patients.
“Dr. Kayler had noticed that the transplant workup period – the time from when a patient was referred for transplant to when they were listed for transplant – took significantly longer for Black and low-income patients than others,” he said. “She explored the potential causes for this and suspected that, in many cases, it was due to social determinants, such as transportation and difficulties accessing care. By assigning patient navigators, the unit was able to improve the speed of workup for all patients.”
By 2018, Kayler and her colleagues had built a clinical program that slashed the average time patients spend on the ECMC kidney transplant waiting list. For Black candidates, days spent on the waiting list dropped to 302 days from 540.
“Dr. Kayler’s work has been focused on improving access to transplantable kidneys, both locally and nationwide for patients suffering from advanced chronic renal failure,” said Steven Schwaitzberg, M.D., SUNY Distinguished Professor, chair of the department of surgery in the Jacobs School and president of UBMD Surgery.
“Life on dialysis is no picnic,” he continued. “She is improving the quality of life for many.”
Kayler acknowledged these were major improvements.
“We doubled the rate of timely transplantation for our patients of all races but, if our underserved patients aren’t at the same level as whites, there’s still a disparity,” she said.
Kayler conferred with people in UB’s Clinical and Translational Science Institute (CTSI), who were experienced in community-based participatory research. Her challenge was to find out how patients with kidney failure could be better empowered to navigate the transplant system. The answer was better patient education through videos and peer mentoring.
“We knew that the only way to give culturally tailored information to patients was to have it come from someone like them, someone who knows their challenges,” Kayler said.
Such efforts would need to involve health communications, patient education and digital media, skills that aren’t typically the focus of the training that transplant surgeons go through. It would also require funding, since video animations don’t come cheap. Kayler identified an animator, as well as people who did grant writing so she could explore funding possibilities.
Kayler began holding informal focus groups with patients who provided feedback.
She worked with Thomas Feeley, Ph.D., professor of communication in UB’s College of Arts and Sciences, who studies campaigns promoting organ donation. Together, they applied for and were awarded a $1.3 million grant from the Health Research Services Administration of the U.S. Department of Health and Human Services. The grant funded a pilot test of videos designed to improve what patients knew about kidney transplant and about getting a kidney from a live donor.
Focus on Live Kidney Donation
Noting that only 6,000 live kidney donations happen every year in the U.S., the focus on live donor kidney transplantation is critical, Kayler said.
“Boosting that number could help solve the donor shortage,” she said. “Low rates of live donor kidney transplantation are largely the result of knowledge gaps and misperceptions about it among patients and members of their social networks.”
The intervention Kayler and Feeley developed in collaboration with community input was a series of two-minute animated videos made for sharing called KidneyTIME. The results were more than promising: 98% of the transplant candidates and their social network members found KidneyTIME informative and engaging; at three weeks’ follow-up, 77% had viewed it again on their own device and 63% had shared it.
But to truly understand whether the videos were having the intended effect, Kayler knew she needed to compare two groups of patients: one that was exposed to the videos and one that was exposed to patient education that was the current standard of care. She needed to apply to the NIH to fund a randomized clinical trial.
After months of extensive rewriting and revising, the grant application was finally submitted. In August 2021, NIH awarded Kayler $3.6 million. It was funded on the first try.
The grant was a major boost: It would pay for the testing of the videos and dissemination to the community. Kayler knew it was time to add the perspective that as a surgeon she could never provide – that of someone who’s gone through a transplant.
She thought immediately of Barbara Breckenridge, a passionate patient advocate, founder of the Kidney Foundation of Western New York and a true kidney transplant success story: It has been more than two decades since her kidney transplant in July 1999.
‘Living a Normal Life’
“When I was transplanted with a kidney from a deceased donor, they told me I might get five to seven more years,” Breckenridge said. “And here I am with 23 years. Patients just need to see somebody who has been transplanted who is living a normal life, so they can say, ‘Well if she can do it, I can do it.’ ”
In 2021, Kayler and Breckenridge were awarded a seed grant from UB’s CTSI to create a community advisory board specifically targeting improved transplantation among Black patients. Established during the pandemic, the board, composed of Kayler, Breckenridge, patients, caregivers, donors and a social worker, meets monthly, mostly on Zoom. The members are passionately united in their goal of promoting kidney transplant for Black patients.
The primary focus is to identify barriers to kidney transplant for Black patients and to brainstorm potential solutions. They are launching a peer mentoring effort so that Black transplant recipients can directly educate other Black patients who are considering a transplant.
But the members, so well versed in the needs of the patients, have found other ways to serve as well. Breckenridge created Kidney Health Together, a volunteer-run 501(c)(3) organization whose mission is to help kidney patients in Western New York live healthier lives. It operates the Healthy Living Pantry, which provides healthy food choices for kidney patients experiencing food emergencies. Many of these patients are in low socioeconomic groups and cannot work.
The connections that Kayler and her teams, consisting of both hospital staff and community members, have established and nurtured are a result of the commitment that she brought with her to Buffalo and that has been intensifying ever since.
In spite of the many challenges, Kayler said she finds transplant surgery the most fulfilling type of surgery she could do.
“I want everybody to be able to get a kidney transplant as soon as possible,” she said. “I chose transplant surgery because it saves the lives of people who are on the brink of dying, some of whom had given up hope. With every transplant we do, everyone is happy and hopeful: the patient, the family, the transplant team, even the hospital leadership.
“It’s a celebration of life.”
Local kidney health activists, transplant recipients and donors met recently at ECMC with Liise Kayler, UB professor of surgery and head of the ECMC transplant program, and transplant recipient Barbara Breckenridge, founder of Kidney Health Together, to discuss how to raise awareness about kidney health. From left: Richard Clark, veterans advocate and dialysis patient; Aurelia Keaton, living donor; Esmeralda Sierra, Kidney Health Together board member; Breckenridge; Kayler; Tara Fulgham, dialysis social worker; and Helton Briggs, transplant recipient. (Photo by Sandra Kicman // provided by the University at Buffalo)