A Program to Increase Living Donations in African Americans

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DESCRIPTION (provided by applicant): South Carolina (SC) has one of the highest rates of end stage renal disease among African Americans (AA). These patients constitute 70% of the patients waiting for a transplant but receive only 50% of total transplants and the lowest number of living donor transplants. In our previously funded grant proposal, we wanted to identify specific barriers to living donation that exist in the AA community and sought to overcome them by an active intervention program. We observed a three fold increase in the number of living donors but still had a 30% drop out rate (patients who did not complete evaluation after volunteering to donate). A critical analysis of our educational program suggested that the health care provider had to be better prepared as educators to tailor the information to the potential donor's readiness to learn. In addition, to allow for sufficient time to help the transplant recipient identify potential donors, and enable the donor education to be personalized according to each individual's readiness to learn, it is anticipated that starting the donor identification and education process early in the disease process will allow maximal opportunity for communication with patients and families. Finally, the education that we currently provide may be stressful and difficult to absorb particularly for a healthy donor. We will replace much of the information currently transmitted with process guidance provided by a "patient navigator". Our overall Hypothesis is that live kidney donation in African Americans will increase with the utilization of 1) educators who are professionally trained to work with AA families, 2) early identification and education of AA donors in potentially "high yield" settings, and 3) navigation of the AA donors by these educators. Health Care Providers will receive professional training for working with AA patients and families. The skills include educating by assessing readiness, appropriately pacing information, assessing understanding, accepting responses and probing for deeper concerns. A Community Advisory Board will be utilized to ensure that the educators are sensitive to the needs of minorities. Patient Educators will be placed at the offices of nephrologists to allow early access to patients with end stage renal disease nearing dialysis. This early contact will allow more time to establish trust between the educator and the patient and prospective donors. Patient navigators will help the potential donors move successfully through the complex evaluation process, while at the same time being available to educate, reinforce previous learning, and provide emotional support for the donor and other family members. Racial disparities continue to exist in kidney transplantation. Increasing the number of living donors in the AA community will result in more transplants in this racial group which will ultimately improve graft and patient survival and lower waiting times.