Transforming Curiosity into Donation: Validating a Risk Prediction Index to Detect and Prevent Drop-Out in Potential Living Kidney Donors who are Racial/Ethnic Minorities

将好奇心转化为捐赠：验证风险预测指数，以检测和防止少数族裔潜在活体肾脏捐赠者的退出

• 批准号: 10730846
• 负责人: Amy Doggette Waterman
• 金额: $ 25.46万
• 依托单位: METHODIST HOSPITAL RESEARCH INSTITUTE
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-01 至 2028-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10730846
• 关键词: Address; Adult; Advocate; Black race; Caring; Chronic Kidney Failure; Clinical; Color; Communities; Confusion; Curiosities; Data Analyses; Databases; Decision Making; Development; Dialysis procedure; Disparity; Donor person; Dropout; Drops; Early identification; Education; Educational Intervention; End stage renal failure; Ensure; Ethicists; Ethnic Origin; Evaluation; Face; Family member; Foundations; Fright; Gender; Geography; Goals; Hispanic; Hispanic Populations; Individual; Institution; Intervention; Intervention Trial; Interview; Kidney; Kidney Failure; Latino Population; Living Donors; Low income; Medical; Methodist Church; Minority Groups; Outcome; Patient Education; Patients; Persons; Preparation; Process; Race; Readiness; Research; Resources; Risk; Risk Factors; Scientist; Socioeconomic Factors; Socioeconomic Status; Specialist; Subgroup; Time; Transplant Recipients; Transplantation; Underserved Population; Universities; Validation; Vulnerable Populations; Work; community engaged research; disparity reduction; ethnic minority; experience; high risk; improved; indexing; living kidney donor; low socioeconomic status; optimal treatments; patient engagement; peer coaching; peer support; predictive tools; prevent; programs; prospective; psychosocial; racial minority; risk prediction; screening; social health determinants; socioeconomics; standard of care; transplant centers; transplant registry; underserved community; volunteer

PROJECT SUMMARY Approximately 1 in 7 US adults have chronic kidney disease (CKD), and >800,000 patients are in full kidney failure also called end-stage kidney disease (ESKD). The optimal treatment for ESKD is living kidney donor transplantation (LKDT); however, the standard of care continues to be ongoing dialysis, which has poor clinical outcomes in comparison to LKDT. CKD continues to increase among Hispanics and low-income patients. Black and Hispanic/Latino persons are respectively 3.1- and 1.3-times more likely than White persons to develop ESKD. Many individuals are curious about becoming a living donor, but some decide not to donate for unknown reasons. This prevents transplant centers and kidney organizations from improving their kidney donation process and tailoring donor care to overcome barriers, particularly for vulnerable and underserved populations. Drop-out is especially common for potential donors who are Black and Hispanic, specifically those who face greater socioeconomic challenges to donating, and those who are not biologically related to their kidney patients. Drop- out from these groups of potential donors contributes to known disparities in LKDT. To reduce disparities in living donation and increase LKDT, we propose a multi-step study that includes: Aim 1a: Early identification of patients of all races/ethnicities at higher risk of dropping out from the donor evaluation process via secondary data analyses of multiple regional and national donor databases. A tailored risk prediction index (LD-DROP) will be developed and tailored to characterize the risk of drop-out among potential donors at the time of initial screening or contact, including subgroup analyses by race, ethnicity, and socioeconomic status; Aim 1b: Validation of the LD-DROP index by prospectively tracking a large, diverse group of individuals presenting for living kidney donor evaluation at two large and geographically diverse transplant centers; Aim 2: Individual interviews of potential living donors of various race, gender, and level of risk for drop- out will be conducted to explore their decision-making and readiness to donate, what vulnerabilities and barriers to donation they face, and what financial, psychosocial, peer mentoring, and educational interventions might be most helpful for overcoming these barriers; Aim 3: An intervention to address donation barriers will be piloted for potential donors at high drop-out risk through a national online peer support program and transplant center- based education programs for potential living donors. Project deliverables will be made freely available nationwide via partnerships with the Scientific Registry of Transplant Recipients Living Donor Collective initiative and the National Kidney Foundation.

项目概要 大约七分之一的美国成年人患有慢性肾脏病 (CKD)，超过 800,000 名患者患有全肾病 衰竭也称为终末期肾病（ESKD）。 ESKD 的最佳治疗方法是活体肾脏捐赠 移植（LKDT）；然而，护理标准仍然是持续透析，临床效果不佳 与 LKDT 相比的结果。西班牙裔和低收入患者中的 CKD 持续增加。黑色的 西班牙裔/拉丁裔人患此病的可能性分别是白人的 3.1 倍和 1.3 倍 ESKD。许多人对成为活体捐赠者感到好奇，但有些人决定不为未知捐赠 原因。这阻碍了移植中心和肾脏组织改进其肾脏捐赠流程 调整捐助者的护理以克服障碍，特别是针对弱势和服务不足的人群。辍学 对于黑人和西班牙裔的潜在捐赠者来说尤其常见，特别是那些面临更大困难的人 捐赠的社会经济挑战，以及那些与肾病患者没有生物学关系的人。降低- 这些潜在捐助者群体中的差异导致了已知的 LKDT 差异。为缩小生活差距 捐赠并增加 LKDT，我们提出了一项多步骤研究，其中包括： 目标 1a：及早识别所有种族/族裔中退出捐赠者风险较高的患者 通过对多个区域和国家捐助者数据库的二次数据分析进行评估过程。量身定制的 将开发和定制风险预测指数（LD-DROP），以描述辍学风险 初步筛选或接触时的潜在捐赠者，包括按种族、族裔和性别进行亚组分析 社会经济地位；目标 1b：通过前瞻性跟踪大型、多样化的群体来验证 LD-DROP 指数 在两个大型且地域不同的移植中心接受活体肾捐献者评估的个人数量 中心；目标 2：对不同种族、性别和下降风险水平的潜在活体捐赠者进行单独访谈 我们将探讨他们的决策和捐赠意愿、存在哪些弱点和障碍 他们面临的捐赠，以及可能采取的财务、心理、同伴指导和教育干预措施 对克服这些障碍最有帮助；目标 3：将试行解决捐赠障碍的干预措施 通过国家在线同伴支持计划和移植中心，为处于高辍学风险的潜在捐赠者提供帮助 为潜在的活体捐赠者提供基础教育计划。 项目成果将通过与科学注册处的合作在全国范围内免费提供 移植受者活体捐赠者集体倡议和国家肾脏基金会。