Culturally Adapted Strategies to Enhance Kidney Donation in Native Communities

描述（由申请方提供）：美国印第安人（AI）中接受治疗的终末期肾病的患病率是美国白色人的3.5倍，而终末期肾病的平均发病年龄比白人小6岁。尽管肾脏移植的转诊率相似，但AI比白人更不可能被列入移植等待名单或接受移植。2009年，有7，682名人工智能接受透析，但只有876人在等待名单上。更糟糕的是，2011年全国只有20名活体肾脏捐赠者是AI。这些发现反映了复杂的因果因素，特别是对于农村的人工智能，包括 保留地和移植中心;难以完成移植前评估;缺乏匹配的肾脏;对移植的精神影响的担忧;以及感知到的歧视。2007年，NIDDK资助了6个学术中心，包括我们自己的中心，以测试增加少数民族器官捐赠的方法。我们与5所部落学院合作，开展了一个混合方法项目，以了解人工智能患者对肾脏捐赠的信念和障碍。我们的定性研究显示，认可机构愿意捐赠器官予家庭成员及其他原住民受赠者。我们对当地部落活动中的1，231名社区成员进行的调查发现，与家人或项目工作人员交谈以及观看有关器官捐赠的个性化数字故事对成为器官捐赠者的决定影响最大。在这些活动中，15%的受访者登记成为捐助者。这些发现为我们的战略提供了信息，即在3个农村地区进行多层次干预以增加肾脏捐赠：华盛顿的Lummi Nation和邻近社区，以及蒙大拿州的Fort Peck Tribes和Blackfeet Nation。我们的首要目标是增加活体肾脏捐赠。我们利用RFA DK- 06-016下进行的研究，调整James Rodrigue博士的出诊计划、Prabhakar Baliga博士的患者导航项目， Dr. L. Ebony Boulware的教材我们的具体目标是：1）通过使用新媒体和调整现有的教育材料以及在AI社区使用的成功的家庭移植教育计划来增加活体供肾移植; 2）通过患者导航改善移植评估的完成;第三章通过在社区活动中征求捐赠者登记，并向生命中心西北部的重症监护捐赠促进者提供文化定制的材料，鼓励死者捐赠医院;（4）调查西北肾脏网络中的AI透析患者，以增加我们对AI肾脏捐献和移植的认识。这个创新项目利用了NIDDK在少数民族器官捐赠方面的投资以及我们与部落社区的关系。鉴于糖尿病的惊人流行，慢性和终末期肾病的快速增加，以及人工智能中农村居住的频率，我们需要更多地了解影响肾脏捐赠决定的因素，以及将这些知识转化为文化上可接受的方法的新策略增加肾脏捐赠和移植。 公共卫生相关性：美国印第安人的慢性和终末期肾病发病率不成比例地高，而肾脏捐献和移植率是美国任何种族或族裔群体中最低的，迫切需要新的战略来增加肾脏捐献和移植，以改善这一严重缺乏服务的人口的生活质量。基于我们以前在部落社区肾脏捐赠方面的工作，并利用其他研究人员在少数民族群体中的成功努力，拟议的多层次，多地点研究将立即返回临床和 对服务于美洲印第安人的医疗机构的公共卫生影响。

DESCRIPTION (provided by applicant): The prevalence of treated end-stage renal disease in American Indians (AIs) is 3.5 times higher than in White Americans, while the mean age of onset of end-stage renal disease is 6 years younger than in Whites. Despite similar referral rates for kidney transplantation, AIs are less likely than Whites to be placed on the transplant waiting list or to receive a transplant. In 2009, 7,682 AIs were on dialysis, but only 876 were on the waiting list. Still worse, only 20 living kidney donors nationwide were AI in 2011. These findings reflect complex causal factors, especially for rural AIs, including long distances between reservations and transplant centers; difficulties completing pre-transplant evaluations; a shortage of matching kidneys; concerns about the spiritual implications of transplantation; and perceived discrimination. In 2007, NIDDK funded 6 academic centers, including our own, to test ways to increase organ donation in minorities. We partnered with 5 tribal colleges for a mixed-methods project to understand beliefs about and barriers to kidney donation among AIs. Our qualitative work revealed that AIs are willing to donate organs to family members and other Native recipients. Our survey of 1,231 community members at local tribal events found that the decision to become an organ donor was most strongly influenced by talking with family or project staff and by watching a personalized digital story about organ donation. At these events, 15% of respondents registered to become donors. These findings inform our strategy to conduct a multi-level intervention to increase kidney donation at 3 rural sites: the Lummi Nation and adjacent communities in Washington, and the Fort Peck Tribes and Blackfeet Nation in Montana. Our overarching goal is to increase living kidney donation. We leverage research conducted under RFA DK- 06-016 by adapting Dr. James Rodrigue's House Calls program, Dr. Prabhakar Baliga's patient navigation project, and Dr. L. Ebony Boulware's educational materials. Our specific aims are to: 1) increase living donor kidney transplants by using new media and by adapting existing educational materials and a successful in- home transplantation education program for use in AI communities; 2) improve completion of transplantation evaluations through patient navigation; 3) encourage deceased donation by soliciting donor registration at community events and providing culturally tailored materials to LifeCenter Northwest donation facilitators at critical care hospitals; and 4) survey AI dialysis patients in te Northwest Renal Network to augment our knowledge of kidney donation and transplantation in AIs. This innovative project capitalizes on NIDDK's investments in minority organ donation and our relationships with tribal communities. Given the striking prevalence of diabetes, the rapid increase in chronic and end-stage renal disease, and the frequency of rural residence among AIs, we need more knowledge of the factors that influence decisions to donate kidneys, as well as new strategies to translate this knowledge into culturally acceptable approaches to increasing kidney donation and transplantation. PUBLIC HEALTH RELEVANCE: Rates of chronic and end-stage kidney disease are disproportionately high among American Indians, while rates of kidney donation and transplantation are the lowest of any racial or ethnic group in the U.S. New strategies are urgently needed to increase kidney donation and transplantation to improve the quality of life of this dramatically underserved population. Building on our previous work on kidney donation in tribal communities, and leveraging successful efforts by other researchers in racial minority groups, the proposed multi-level, multi-site study will return findings with immediate clinical and public health implications for healthcare facilities that serve American Indians.