Living Donor Information Network for Caregiving

描述(申请人提供)：超过1900万美国人经历了终末期肾病(ESRD)的破坏性和代价高昂的影响，非裔美国人(AA)的发病率和患病率是高加索美国人的4-6倍。AAS接受活体肾脏捐赠的比率很低，这加剧了这种差距，因为活体肾脏捐赠提供了最好的存活率，并改善了身体和心理结果。2008年，活体肾脏捐赠者中只有12%是AAA。捐赠者候选人和照顾者关于捐赠的信息不足，以及对医疗保健团队和移植中心缺乏信任是已报告的关键障碍(Boulware等人。2002年；Sankar等人，2006年)。这项拟议研究的目的是试行随机临床试验(RCT)程序，以确定基于网络的信息和支持干预对移植团队和移植中心的心理结果和信任的相关性。护理活体捐赠者信息网(LINC)有三个组成部分：1)信息模块和链接，2)以前肾脏捐赠者及其照顾者为导师的讨论板，3)在线学习工具。这项研究的具体目的是：1)确定捐赠者候选人与照顾者特征的关系，包括种族(黑人和白人)、既往互联网使用情况以及术后使用LINC的身体状况(访问次数和模块以及帖子数量)。2)在患有和不患有LINC的患者中，确定捐赠者候选人和照顾者的特征与心理结果和对医疗团队和移植中心的信任之间的关联。3)探索捐赠者候选人和非正式照顾者对LINC讨论板的使用情况。这一干预措施将解决卫生专业人员信息不足的障碍，并可能减少美国卫生协会对由于种族偏见而提供的信息不足的担忧。LINC的长期目标是开发一种在线信息和支持的模式，在全国移植中心实施，以增加AA活体肾脏捐赠者的数量。将采用定量分析和定性描述相结合的混合方法，以丰富和提供量化结果的背景。LINC的干预将为全国移植中心使用基于网络的技术向活体器官捐赠者及其非正式照顾者提供信息和支持提供模式。 公共卫生相关性：迫切需要解决1900多万美国人中的终末期肾病(ESRD)问题，特别是在非洲裔美国人中，他们的发病率和患病率比高加索美国人高4-6倍，但只接受了活体肾脏捐赠的12%。由于对潜在捐赠者的教育和支持不足，在非裔美国人获得基于互联网的健康信息的机会迅速增加之际，可以利用互联网解决非裔美国人在生活捐赠方面的差距(Pew，2007)。活体捐赠者护理信息网(LINC)是一种创新的基于网络的干预措施，为研究人群中的活体肾脏捐赠者及其非正式照顾者提供教育和支持，研究人群具有种族、民族和文化多样性。

DESCRIPTION (provided by applicant): Over 19 million Americans experience the devastating and costly effects of End Stage Renal Disease (ESRD) African Americans (AA) experience an incidence and prevalence rates 4-6 times greater than Caucasian Americans. Compounding this disparity is the low rate of AAs receiving living kidney donation, which provides the best survival and improvement in physical and psychological outcomes. Only 12% of the living kidney donors in 2008 were AAs. Inadequate donor candidate and caregiver information about donation, and a lack of trust in the healthcare team and transplant center are critical barriers which have been reported (Boulware et al. 2002; Sankar et al., 2006). The purpose of the proposed study is to pilot test randomized clinical trial (RCT) procedures to determine the association of a web-based information and support intervention on donor and informal caregiver psychological outcomes and trust in the transplant team and transplant center. The Living Donor Information Network for Caregiving (LINC) has three components: 1) information modules and links, 2) a discussion board with former kidney donors and their caregivers as mentors, and 3) online study instruments. The specific aims of the study are to: 1) To determine the relationship between donor candidate and caregiver characteristics including race (black and white), previous internet use, and postoperative physical status to use of LINC (times and modules accessed and number of posts). 2) To determine associations in donor candidate and caregiver characteristics to psychological outcomes and trust in the healthcare team and transplant center among those with and without LINC. 3) To explore donor candidate and informal caregiver use of the LINC discussion board. This intervention will address the barrier of inadequate information from health professionals and may diminish concerns among AAs that information provided is inadequate due to racial biases. The long-term objective of LINC is to develop a model of online information and support to be implemented at transplant centers nationally to increase the number of AA living kidney donors. A mixed method approach will be used with quantitative analysis and qualitative description serving to enrich and provide context for quantitative findings. The LINC intervention will provide a model for transplant centers nationally in the use of web-based technology to provide information and support to living organ donors and their informal caregivers. PUBLIC HEALTH RELEVANCE: There is an urgent need to address End Stage Renal Disease (ESRD) in over 19 million Americans and particularly in African Americans who experience incidence and prevalence rates 4-6 times greater than Caucasian Americans but receive only 12% of the living kidney donations. The disparity in living donations among African Americans which is attributed to inadequate education and support of potential donors can be addressed using the internet at this time of rapidly increasing access to internet-based health information among African Americans (Pew, 2007). The Living Donor Information Network for Caregiving (LINC) is an innovative, web-based intervention that provides education and support to living kidney donors and their informal caregivers in a study population that is racially, ethnically, and culturally diverse.