Survey finds misperceptions about organ transplant hinder donation decisions

A survey developed by physicians and researchers at Emory University about organ donation and transplantation found that misperceptions about the lifesaving process are the most common deterrents for donating organs. The survey responses and findings were recently published in the Journal of the American College of Surgeons.

Having concerns over getting inadequate medical care following an illness or accident, if registered as a donor, was the strongest independent predictor of willingness to donate overall, the survey found. Some other less concerning factors or myths that impeded willingness in the study included thinking there was an increased cost for the donor family when donating organs and thinking a famous person would get higher priority on the waitlist than others.

The researchers developed the survey addressing attitudes and factual knowledge about organ donation and transplantation. The survey was placed in paper format in four healthcare provider waiting rooms in Georgia and distributed online (Survey Monkey). The survey's primary purpose was to determine the association between answers to seven specific knowledge-based questions regarding organ donation/transplantation and willingness to (1) be an organ donor and (2) donate a deceased family member's organ.

"We wanted to look at variables in a multivariate way – ones previously shown to deter donation in a univariate way – to find if there were any that strongly and independently predicted (un)willingness to donate," says Marty T. Sellers, MD, MPH, assistant professor of surgery, Division of Transplantation, Emory University School of Medicine.

Univariate analysis is the simplest form of data analysis that contains only one predictor variable. Multivariate analysis is the analysis of three or more variables and more accurately identifies the variable(s) that independently predict an outcome by adjusting for other variables.

"The myths chosen to evaluate in our survey were known from prior studies to be reasons people cite that interfere with their willingness to donate," says Sellers. "These myths were the focus of this publication, since they represent things that are 'correctable' through outreach and education."

Surveys were returned by 772 respondents, with 766 (99.2 percent) answering the primary questions of whether they wanted their organs donated upon death "if doing so would save someone else's life." Of the respondents, 84.6 percent were willing to donate, 76.2 percent were female, 79.7 percent were Caucasian and 16.5 percent were African American. The respondents represented 37 states.

Having concerns over getting inadequate medical care from paramedics or physicians if registered as an organ donor was the strongest concern of willingness to donate overall. African Americans were more likely than Caucasians to have this concern (20.2 percent vs. 9.5 percent).

"Medical teams in charge of caring for the sick and/or injured are not part of a transplant team, and their focus is entirely on the person who comes in under their care," explains Sellers. "People awaiting transplants are completely off their radar screen. It is only when certain clinical 'triggers' are met signifying that a potential donor exists in a hospital that the organ procurement organization or OPO—LifeLink of Georgia in our case—is notified by the hospital staff that they have a potential donor."

The survey also found that willingness to donate a family member's organs depended on whether a discussion about a donation had previously occurred: 61 percent would donate with no prior discussion, while 95.2 percent would donate if the family member had said "yes" to donation, 11 percent if "no."

While solid organ transplantation saves the lives of thousands of people each year, many patients die while waiting on transplant waitlists. According to the Organ Procurement and Transplantation Network (OPTN), in 2017, 34,796 organs were transplanted in the U.S., with 28,587 organs coming from deceased organ donors. A single donor can provide lifesaving organs for up to eight or nine recipients.

With more than 115,000 people on waitlists for a lifesaving organ transplant, better understanding of the common donation myths and misperceptions is crucial.

"Educating the public regarding these and other misperceptions is desperately needed," says Sellers. "With education, we believe this would convert more eligible donors into actual donors, which would shorten waiting times and allow transplantation earlier in a disease process. It would also lead to less pre- and post-transplant mortality; many living donors would be spared the risks associated with donating; and overall costs associated with transplantation would decrease."