Researchers aim to increase living organ donations through education program

A new federal grant will allow a team of LifeQuest Organ Recovery Services and University of Florida researchers to evaluate a program that could increase the number of kidney transplant donors. More than 50,000 Americans are on the waiting list for a kidney transplant. Because of a lack of donor organs, only 14,000 kidney transplants were performed last year, according to the United Network for Organ Sharing.

The $510,000 grant from the U.S. Department of Health and Human Services will be used to determine the effectiveness of a home-based education program to inform family and friends of patients awaiting kidney transplants about becoming living kidney donors.

“With more than 80,000 people on the national organ transplant waiting list, it is imperative that we explore new ways to educate people on the importance of donation and look to an expanded donor base,” said Danielle Cornell, executive director of LifeQuest Organ Recovery Services and the study’s principal investigator. “This project has the potential to have a significant impact on living donation rates.”

LifeQuest Organ Recovery Services is an organ recovery program that serves a 36-county region in northern Florida. LifeQuest and UF researchers conducting the study will work closely with clinicians at the Shands Transplant Center at UF, who have performed nearly 3,000 kidney transplants since 1966.

“Because of the lack of deceased donors, the only way many patients will receive a kidney transplant is if they are able to find a living donor,” said Richard Howard, Ph.D., M.D., the director of transplantation at UF and the Robert H. and Kathleen M. Axline professor of surgery at the UF College of Medicine.

Kidneys from living donors are an attractive alternative to organs from deceased individuals. Recipients of living organs can avoid the deterioration in health that may occur while they wait for a matching organ from a deceased donor. Patients who received kidneys from a family member or friend had a 97.8 percent survival rate in the year following the transplant and a 94.8 percent survival rate at three years, the United Network for Organ Sharing reported. Patients who received kidneys from deceased donors had a 94.4 percent survival rate at one year and 89.2 percent at three years.

“While we do an outstanding job of educating patients about living donation in the medical clinic, we can educate only those family members who come to clinic with the patient,” said James Rodrigue, Ph.D., a professor in the UF College of Health Professions’ department of clinical and health psychology and the study’s co-investigator. “A home-based approach supplements what we're already doing in the clinic by involving many more people in the educational process. We believe that this will increase the likelihood of family members or friends coming forward for donor evaluation.”

Traditionally, transplant centers rely on the patient to introduce family and friends to the idea of living donation, which may place an unnecessary burden on the patient.

“Some patients are reluctant to approach family members and friends about living donation,” said Rodrigue, also the director of the UF Center for Behavioral Health Research in Organ Transplantation and Donation. “We have heard from patients that they don't want to impose on family members, they don't want to cause any health problems for others or they don't believe that any family members would consider living donation.”

The study will involve 250 end-stage kidney disease patients of the Shands Transplant Center. Some patients will receive a typical clinic-based living donor education program, which includes meeting with the kidney transplant physicians and nurse coordinators, while those randomized to home-based education will receive the same clinic-based education program plus a home visit from a study coordinator. Family members and friends will be invited to attend the session.

The home-based program will include information on the patient’s disease, the benefits of transplantation, factors that affect kidney transplant outcomes and living kidney donation.

“The risks of donation are as low as they can be for individuals having surgery,” Howard said. “One reason is that donors are selected because they are healthy, not because they are ill as is the case for all other patients having surgery.”

Howard noted that risks to the living donor include wound infection and postoperative bleeding.

The researchers hope that the program will not only introduce more potential donors to the option of living donation, but also help the patient and his or her family feel more comfortable with the transplant option and increase their trust in the health-care system.

At the end of the study, researchers will measure the number of people who participated in the educational programs, the number of people who indicated an interest in living donation, the number of living donor evaluations and transplants performed, and patient satisfaction with the living donor education.