Brief Video Addresses Big Barriers to Organ Donation

Coleman, Matthew

doi: 10.1097/01.NEP.0000415987.25995.fe

A five-minute video aiming to alleviate common misgivings about organ donation increased the consent rate to donate by 12%, reported a cluster randomized, controlled trial conducted at a dozen branches of the Ohio Bureau of Motor Vehicles (BMV). The results were published in Annals of Internal Medicine (2012;156:483–490).

“The waiting list is continuing to increase, and the only way we can meaningfully get people off that waiting list is by donating more organs,” said lead author J. Daryl Thornton, MD, MPH, Assistant Professor at Case Western Reserve University School of Medicine, in a phone interview. “I was really interested in creating an intervention that would address the concerns that people had about donation, but at the point where they are actually asked the question.”

The video focused on six sources of apprehension identified in previous research: desire not to think about death and subsequent disfigurement, concern that potential donors may not receive adequate medical care, distrust of the medical establishment, belief that religion may not support donation, desire to be buried with organs intact, and lack of knowledge about the need for organs.

“We assembled a diverse group of 20 people,” Dr. Thornton said. “A couple of them were my former patients who had received transplants, family members who had donated an organ on behalf of loved ones, or families who had had someone die while waiting for an organ. We got them all together in a room in a recording studio and taped them having a free discussion.”

After watching the video on an iPod with noise-cancelling headphones, participants in the intervention group entered the BMV branch to get their driver's license, learner's permit, or state identification card. Upon exiting the branch, those in both the intervention and control groups were then interviewed by the study coordinator and asked to show the license, permit, or identification card they had received, which displayed their donor status.

Of the 443 intervention participants, 84% consented to organ donation, compared with 72% of the 509 control participants.

Members of the intervention group also reported a more favorable perception of donation. They were less likely than control participants to report having insufficient information about donation (34% vs. 44%), wanting to be buried with all organs (14% vs. 25%), and having conflicts with organ donation (7% vs. 11%).

“A ton of misperceptions exist in the general community about organ donation, and education of people is critical,” said Dorry L. Segev, MD, PhD, Director of Clinical Research for Transplant Surgery and Associate Professor of Surgery and of Epidemiology at Johns Hopkins Medicine.

“This study represents the first step of doing that. It gave people the opportunity in a timely manner at the right time to address these misconceptions, which is great. Giving a video intervention that they can watch and think about on their own without the pressure of anybody being coercive is the right approach.”

The study was funded by the National Institute on Minority Health and Health Disparities; the National Center for Research Resources, which was dissolved in December 2011; and the Robert Wood Johnson Foundation.

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Impact on Ethnicities

Dr. Thornton and colleagues were particularly interested in the effect of the intervention on different ethnic groups, where the divide between organ supply and demand is especially evident.

“It is a very complicated question in terms of why minorities may be less willing to donate, and it's hard to piece out,” said Sandra Amaral, MD, MHS, Attending Physician at the Children's Hospital of Philadelphia and Assistant Professor of Pediatrics at Perelman School of Medicine at the University of Pennsylvania. “Ethnicities have different diseases, and their socioeconomic status may be different; educational levels are different. Also, across ethnicities, there are different cultural and religious beliefs.”

The video was in fact effective in black participants, with 76% consenting in the intervention group versus 54% in the control group.

“Indeed, they did improve significantly, which is a very encouraging result,” Dr. Segev said.

In the intervention group, the difference in consent rates between blacks and whites was much slimmer, he added. Among white participants, consent rates were 88% in the intervention group and 77% in the control group.

For Hispanic participants, who comprised only 5% of the trial population, no significant benefit was observed, however.

“The trend among Hispanics looked like it was very similar to blacks, but the sample sizes were too small to get the significance,” Dr. Thornton said.

In terms of other attitudes toward organ donation, there were no noted differences between intervention and control participants in citing trust that organs would be allocated fairly (91% vs. 89%) or concern that carrying a donor card would lead to insufficient medical care (17% vs. 20%).

“It seems that the medical piece was not well addressed in the video,” Dr. Amaral said. “One alternative approach or complementary approach would be to advance the discussion about organ donation in the medical setting between patients and their long-term care providers, with whom they may have built up trust.

“It is a challenge to incorporate that into a general wellness visit, but I think that that actually may be an approach to start these discussions much earlier.”

The participation in the video of individuals speaking from personal experience was a particular asset of the intervention, though, she noted.

“I think the messages were very focused in addressing some of the common misconceptions of organ donation, and they were coming from people who were nonmedical, who had really lived through it,” Dr. Amaral said. “All of these combined send across a strong, clear, short, and relatable message.”

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Broader Application

Given the largely positive results of the trial, the video intervention should be applied on a larger scale, Dr. Segev said.

“When you find that something is extremely effective, the next step would be to give this to everybody who shows up to the driver's license boards,” Dr. Segev said. “If you give everybody who walks through the door a video iPod and let them decide if they want to listen to it or not, maybe some of those who would have declined to participate in the study would be affected by this intervention.”

Of 5,207 BMV patrons, 2,151 did not meet the eligibility criteria for the trial—they did not visit the branch to get a license, they were unable to get a license, or they did not speak English—and 2,054 declined to participate (44% in the intervention group and 34% in the control group).

Of the remaining 1,002 patrons, 35 withdrew from the study before completing the interview, and 15 did not let the study coordinator examine their driver's license, leaving 952 in the analysis (443 in the intervention group and 509 in the control group).

“The question is, how would this apply to those who decline to participate?” Dr. Segev said. “It is those who declined to participate whom we are really after, besides those who agreed to participate.

“The next question is, does this education extend to the family members and next of kin of those who signed their licenses, because those are the folks who make the decision when someone unexpectedly dies on whether their organs will be donated.”

Education about organ donation should extend not only to BMV patrons, but to employees, Dr. Thornton noted. In the study, 9% of participants weren't asked by BMV staff about their willingness to be an organ donor.

Staff should be trained to answer questions about organ donation, and materials in addition to video should be offered to make it easier for people to get the information they need, Dr. Thornton added.

“I think we should develop other interventions,” he said. “We found a pretty nice result, but still, 16 percent in the intervention didn't consent to donation. Even among the African-American group, we raised them up to 76 percent, but that was around the same rate as the control group in the non-Hispanic white population.

“I definitely think there is room for improvement, but this is a start.”

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© 2012 Lippincott Williams & Wilkins, Inc.