Improving Transplantation Education Requires a Multipronged Approach

Empowering patients with information

Although nephrologists should play a key role in patient education, oftentimes the education needs to start much earlier, Kumar said. Patients, particularly those with diabetes or a family history of kidney diseases, should have their kidney function measured regularly and be taught what their numbers mean—their serum creatinine value, random urine albumin-to-creatinine ratio, and blood glucose number. This early detection could help prevent or slow progression of loss of kidney function. “It's empowering our patients with information as it applies to their condition so that they have the chance to be more active participants in the trajectory of their own care,” Kumar said.

Kumar recognizes, however, that there are barriers to the ideal version of early, ongoing, effective education, especially for individuals who face negative social determinants of health, such as low income, lack of transportation, no health insurance, or interpersonal and structural racism. Racial and ethnic minorities in the United States are less likely than people who are White to receive kidney care before kidney failure, to receive a kidney transplant, and to go on home dialysis. Individuals who are Black in the United States, in particular, are less likely to be placed on the kidney transplant waitlist when compared with people who are White (3).

In addition, there are no standardized, evidence-based guidelines that tell health care providers how to educate a patient about transplant options, said Tanjala S. Purnell, PhD, assistant professor at the Johns Hopkins Bloomberg School of Public Health in Baltimore, MD, who researches ways to improve equity in access to kidney transplantation.

Medicare ESKD Form 2728 asks whether a patient has been informed of transplant options, but it does not go into details about that education. The form does not ask “exactly which components about transplant were they informed about or how long was the conversation, the timing of the conversation, none of that,” Purnell said.

Furthermore, transplantation is an evolving field. Purnell wonders: “Are patients being told about innovative options beyond a living donor they know or beyond being placed on the deceased donor waiting list?” For example, studies have shown positive results in patients who have received kidneys from donors who have hepatitis C, now that more effective and tolerable, direct-acting antivirals are available to cure hepatitis C (4).

Another challenge is that physicians are often not taught in medical school and residency about how to engage a patient based on his or her individual learning style or culture. “Care isn't cookie cutter,” said Quin Taylor, a 2015 kidney transplant recipient and patient advocate on ASN's Excellence in Patient Care Advisory Committee. “You can't approach every patient the same way and expect [him or her] to understand and be proactive in the same way, especially culturally. Patients have a care team for a reason, and I think each partner in that care team needs to take the time to find an effective way to help patients understand not only why transplantation is important but also to address their concerns.”

As a child, Taylor watched her father go through years of dialysis before getting a transplant. But because of complications he went through, when Taylor was first told she needed a transplant, she wanted no part of it. She planned to stick with dialysis at first. “There were certain things that I had to learn for myself, and one of the biggest things was that transplantation isn't a cure…. Once I was able to understand that, it helped me on the journey.”

Taylor switched from in-center dialysis to at-home dialysis and became very proactive in the transplantation process. She worked through barriers, such as needing to lose weight first. “I was very self-motivated, but not all patients are.”

Like with Taylor, it can take time for patients to choose or accept the decision their health care team believes is the best one for them. Having these conversations early and often “gives patients the opportunity to figure out what this is [because] a lot of times patients crashed into dialysis because they didn't know they had kidney disease[s],” Taylor said.

Including Patient Goals in Decision-making

Patient choice and decision-making need to be a part of the educational process, Taylor added. A 2022 CJASN study (5) showed that those on the kidney transplant waitlist would be willing to have a kidney with fewer years of quality if it meant they could get the transplant now, rather than spend 2 more years on the waitlist for a better kidney. Approximately 20% of deceased donor kidneys are discarded in the United States each year. Could some of those kidneys benefit patients?

In the CJASN study of 605 participants (5), the average respondent said he or she would accept a kidney today that had 6½ years of expected graft survival rather than waiting 2 more years for a kidney with 11 years of expected graft survival. Those less willing to accept increases in wait time for improvements in kidney quality were more likely to be older, Black, not have a college degree, and have a lower Karnofsky Performance Status score, which assesses a patient's ability to handle activities of daily living.

Health care providers “don't always include patients in on the decision-making,” Taylor said. “Doctors sometimes write goals for patients, instead of including [patients] in their conversation—what are their goals? You might want them to get transplanted; they might just want to be able to travel.” Taylor continued, “I always say, doctors are the experts in the science of diseases; the patients are the experts in the experience of those diseases. So, when it comes to connecting the dots, patients have an insight that doctors will never have, no matter how many times they treat a patient.”

Doctors sometimes write goals for patients [but instead should ask] what are their goals? You might want them to get transplanted; they might just want to be able to travel.

Purnell has been researching initiatives to increase the number of living donor transplants. Oftentimes, a person needing a transplant may not know how to ask or be comfortable with asking others for help, especially beyond his or her close family members and friends. Purnell has been partnering with church and community leaders in Baltimore to develop ways to increase awareness among healthy people about the need for donations and to create support systems. Such help could include providing transportation to dialysis or pairing someone up with a medical professional in his or her community who can attend doctors' appointments with him or her as an advocate.

“Many times there's this notion that certain communities just aren't stepping up, or certain communities just aren't interested,” Purnell said. “But in reality…communities are willing to step up, and communities do care. It's just that that's not a topic often that many community members are introduced to until a loved one is faced with this decision.”

Helping patients find healthy living donors

Health care professionals can also help patients think beyond their close circle for a potential live kidney donor. Chronic conditions such as diabetes and kidney diseases are often clustered in social networks, Purnell said, making it more important to widen the search for a healthy living donor.

One successful initiative has been the Live Donor Champion program, in which people on the transplant waitlist identify someone close to them to be their champion. The champion receives education and materials through the program to help spread awareness about live donation. Ultimately, the goal is for the champion to help find a donor for his or her friend or family member on the transplant waitlist. Such programs can help people learn how to get the word out and ask for help, which can be uncomfortable and difficult.

At UAB, Kumar and her team have instituted a living donor champion and navigator program that helps those on the waitlist identify and ask potential donors. The ability for those in the program to identify a potential living donor increased two- to threefold. The navigator then helps the donor through the entire evaluation process, from identification to final decision and donation.

In one of their studies of 56 program participants, UAB researchers found that program participation was the strongest predictor of having a living donor screened—an increase of more than ninefold compared with standard of care. African American participants were eightfold more likely to have a donor screened than African American non-participants and threefold more likely than Caucasian non-participants, according to the study published in January 2020 in Transplantation (6).

Throughout a patient's journey through CKD and transplantation, education needs to be ongoing and interactive, Kumar said. “In the name of education, we sit them down for an hour and talk at them for that entire time,” she said. “That's information sharing, which is important but not the same as education.”

Education is providing information and then stopping to ask questions to see what they have retained, she said, ultimately ensuring that the knowledge they gained empowers them to care for themselves during vulnerable periods in their transplantation journey. It also includes space for patients or their loved ones and caregivers to ask questions and discuss the unknowns. “Education can be optimized by being early, by being bite-sized, by being progressive, and by [empowering] our patients so they can be true participants in their own care and partners with their medical care teams, as opposed to being present and led along.”