URI receives $1.2 Million grant for program to increase family consent for organ donation KINGSTON, R.I. — November 22, 1999 — Nationally, while opinion polls show widespread public support for organ and tissue donation (better than 80 percent), in fact, only about 50 percent of families actually agree to donate their loved one’s organs when they find themselves confronted with the situation. Knowing when to ask and how to ask a grieving family member to consider donating the organs and tissues of their loved one is a task that takes a tremendous amount of skill, tact, and care. While many factors can influence the family consent decision-making process, initial research has shown that solicitations for consent that do not address the family’s readiness to donate increase the likelihood of refusal. To improve the ability of health professionals to effectively handle such end-of-life discussions and care, the U.S. Department of Health and Human Services (HHS) recently awarded researchers at the University of Rhode Island and their partner, South-East Organ Procurement Foundation in Richmond, Va., a $1.2 million grant for a novel approach to training. The grant was the second-largest of 18 grants awarded by the federal agency in late September. The three-year grant, entitled “Stage-based curriculum-training for procurement coordinators to increase family consent for organ and tissue donation” will evaluate the impact of an innovative training curriculum that is based on the internationally known Transtheoretical Model for behavior change developed at URI. The focus of the training is to help health care professionals be better-prepared to assess whether a family is open to considering organ donation following the death of a loved one. The development of the training will also advance understanding of the important components of the donation consent process for both health professionals and family decision makers by systematically evaluating the change processes that are involved. “Health professionals who offer the option of donation are meeting families at the worst point of their lives, at the death of a loved one. It is essential for these professionals to be able to assess how ready grieving family members are to consent to organ donation and to provide appropriate interventions that will help families make an informed decision,” said the grant’s principal investigator, Mark L. Robbins, assistant research professor at the URI Cancer Prevention Research Center (CPRC). “This curriculum will provide health professionals with a greater ability to assess a person’s level of readiness for consenting to organ donation, and then help them to communicate with the individual based on that decision-making stage.” According to Robbins, by enhancing this delicate communication process the training program will help to increase the number of organs donated each year. This year, of the 65,000 patients on the national organ transplant waiting list, almost 5,000 will die while waiting for a donated organ. Less than one-third — about 20,000 — can expect to receive transplants. “Organ transplantation has developed from an experimental therapy to a highly effective treatment for end-stage organ failure,” Robbins said. “Unfortunately, while demand for organ transplants has continued to rise at a significant rate, the supply of available organ donors has increased at only a fraction of that rate. One key barrier is that approximately half of the families of potential donors refuse consent. This obstacle has remained despite extensive efforts to inform and educate the public and professionals about the need for organ donation.” “It is truly rewarding to see how the Transtheoretical Model of behavior change can be applied to so many important issues in our lives,” said URI Professor and CPRC Director James O. Prochaska who developed the model with his colleagues. “It is gratifying that the model will be used to make the process a bit easier for those dedicated to the difficult task of gaining consent for organ donation. Surely, we intended that the model would help people to live longer, healthier lives, and that is consistent with the goal and outcome of successful organ donation programs.” The randomized clinical trial to be conducted will involve organ donor coordinators and staff of 16 organ procurement organizations affiliated with the South-Eastern Organ Procurement Foundation. Intervention group coordinators will participate in four stage-based curriculum-training sessions across 18 months. These interactive sessions are designed to train coordinators to match their donation requests to the needs of each family and focus their efforts on key decisional variables that have been found important in accelerating behavior change in other Transtheoretical Model-based interventions. Coordinators will also receive feedback reports that will be used to improve the coordinators’ abilities to match their donation approach to the needs of each family. Telephone surveys will assess the impact of the coordinator intervention on measures of motivational readiness for donation consent in family members who consented or refused consent for donation. The impact of this training method will be explored in analyses examining donation consent rates, the model’s use with this group, and with potential organ donor family members. Other key decision-making variables, central to the Transtheoretical Model, will also be examined. The HHS grant awarded to URI is part of the Clinton Administration’s National Organ and Tissue Donation Initiative, a comprehensive plan targeting the donor shortage. The program is administered by HHS’ Health Resources and Services Administration’s Division of Transplantation in the Office of Special Programs. x-x-x For More Information: Jhodi Redlich, 401-874-2116