Kidney donation is life-saving for those with end-stage renal disease, providing the possibility of a relatively healthy and productive life. Unfortunately, there is a severe deficit in the number of donor kidneys relative to the number of patients in need. A novel approach to this situation has been the creation of transplantation chains triggered by non-directed (altruistic) donors. Transplantation chains are initiated when a non-directed (altruistic) donor donates a kidney to a patient who has a willing but incompatible donor. Once this recipient is transplanted, his or her original willing-incompatible donor - known as a bridge donor - then passes on the generosity to another recipient. Once the second recipient receives a transplant, their original incompatible donor likewise passes on the generosity to a third recipient. This process can be repeated for multiple iterations creating long chains of transplantations. The patients who receive transplants as part of chains are removed from the deceased donor waiting list, enabling other candidates to move up the waiting list and take their spots. This approach has potential to decrease the competition for deceased donor organs, easing the strain on the waiting list. Yet, very little is known about how non-directed (altruistic) donors and bridge donors make decisions about donating a kidney, nor about characteristics of potential donors who actually donate versus those who do not complete the donation process. Emerging themes from our pilot study suggest a need to further investigate the emotional journey of donors, especially post transplant. Striking patterns between donor demographics, strong health and quality of life outcomes, and specific beliefs are apparent. Therefore, this study utilizes a qualitative-dominant mixed methods approach to develop an explanatory framework for the decisional processes of non-directed donors and bridge donors. People who considered becoming non-directed (altruistic) donors or bridge donors but eventually decided against donating as well as actual non-directed (altruistic) donors and bridge donors will be recruited. Participants will complete an in-depth interview as well as quantitative measures of health related quality of life, anxiety, and depression. The development of the interview guide and selection of the quantitative measures will be informed by an advisory board of stakeholders in the kidney transplant community, including kidney donors and recipients, family members of kidney donor recipients, kidney donation advocates, and representatives from transplant registries. In an effort to ultimately expand the donor pool, results from this stuy will be the first to provide an in-depth description of potential and actual altruistic kidney donos that will provide the foundation upon which to develop educational materials for individuals contemplating kidney donation, create and test tools to identify those most likely to be successful altruistic donors, and to develop concepts and hypotheses to further explore this new and innovative phenomena.
The need for kidney transplants is overwhelmingly larger than the supply of donor organs, but kidney donation chains triggered by altruistic donors offer an innovative solution to this problem. This study will develop a better understanding of the decisional processes of chain kidney donors in order to develop educational materials for individuals contemplating kidney donation and create and test tools to identify those most likely to be successful altruistic donors in order to increase the living donor pool and the quality of th donation experience.
