A Program to Increase Living Donations in African Americans

描述（由申请人提供）： 南卡罗来纳州（SC）是非裔美国人（AA）中终末期肾病发病率最高的地区之一。这些患者占等待移植的患者的70%，但只接受移植总数的50%，并且活体供体移植的数量最少。在我们以前资助的赠款提案中，我们希望确定AA社区中存在的活体捐赠的具体障碍，并寻求通过积极的干预计划来克服这些障碍。我们观察到活体捐献者的数量增加了三倍，但仍有30%的脱落率（自愿捐献后未完成评估的患者）。对我们的教育计划的批判性分析表明，作为教育者，卫生保健提供者必须做好更好的准备，以根据潜在捐赠者的学习准备量身定制信息。此外，为了允许足够的时间来帮助移植受体识别潜在的供体，并使供体教育能够根据每个人的学习准备情况进行个性化，预计在疾病过程的早期开始供体识别和教育过程将允许与患者和家属进行沟通的最大机会。最后，我们目前提供的教育可能会有压力，特别是对于健康的捐赠者来说，很难吸收。我们将用“病人导航器”提供的过程指导来取代目前传输的大部分信息。我们的总体假设是，非裔美国人的活体肾脏捐赠将随着以下因素的利用而增加：1）受过专业培训的AA家庭教育工作者，2）在潜在的“高产”环境中早期识别和教育AA捐赠者，以及3）这些教育工作者对AA捐赠者的导航。卫生保健提供者将接受与AA患者和家庭合作的专业培训。这些技能包括通过评估准备情况、适当调整信息、评估理解程度、接受回应和探索更深层次的问题来进行教育。将利用一个社区咨询委员会来确保教育工作者对少数群体的需要保持敏感。患者教育者将被安置在肾病科医生的办公室，以便抢先体验接近透析的终末期肾病患者。这种早期的接触将使更多的时间来建立教育者和患者和潜在捐赠者之间的信任。患者导航员将帮助潜在的捐赠者成功地通过复杂的评估过程，同时可以教育，加强以前的学习，并为捐赠者和其他家庭成员提供情感支持。在肾移植方面，种族差异仍然存在。增加AA社区的活体捐赠者数量将导致这个种族群体中更多的移植，这将最终提高移植和患者的存活率，并缩短等待时间。

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.