Establishing Foundations to Develop a Treatment Decision Aid for Patients Hospitalized with Unexpected End-Stage Kidney Disease: A Community Engaged Approach

项目摘要 慢性肾脏疾病是美国的一个重大公共卫生威胁，也是第九大死亡原因。在 2018年，超过15%的美国成年人患有慢性肾脏疾病，超过785，000人已经进展到晚期， 阶段性肾病（ESKD），需要肾脏替代治疗（KRT）才能生存。2018年，约 85%的ESKD患者接受中心内血液透析作为主要KRT，尽管在 与家庭透析方式或肾移植相比，生活质量、护理成本和生存率。 此外，在2018年，80.8%的ESKD患者使用中心静脉导管开始KRT（最少 首选透析通路）和46.0-74.7%的患者报告在住院环境中开始KRT。这是 认为部分原因是在所有护理环境中缺乏向ESKD患者提供的KRT教育， 阻碍了他们做出知情治疗决定的能力。此外，大约三分之一的患者 达到ESKD之前没有计划或肾脏护理。非预期ESKD患者遭受增加的 发病率和死亡率，获得肾移植的机会有限，并且不太可能被告知 计划KRT启动的患者。在KRT启动期间提供KRT教育 非预期ESKD患者的住院治疗，这些患者在ESKD前没有接受过肾脏病治疗， CKD门诊，填补了患者教育的重要空白。到目前为止，美国还没有人 对住院接受KRT的患者进行以医院为基础的教育干预，以增加 选择家庭透析或肾移植的患者。采用社区参与的方法，该提案将 进行必要的形成工作，以开发针对以下患者的基于医院的KRT决策辅助 在医院里无计划地启动KRT。因此，本建议旨在：（1）对 文献，以综合现有患者报告的治疗决策信息需求， 晚期慢性肾脏病患者;（2）使用社区参与的方法，确定KRT 有和无ESKD前病史的患者的信息和决策需求及资产 因KRT启动而住院的肾病护理;以及（3）确定美国的位置，特别是在 美国东南部（格鲁吉亚、北卡罗来纳州、南卡罗来纳州），ESKD前护理有限，并产生热量 描述接受ESKD前护理的地理变异性的地图，以确定进行检测的医院地点， 实施未来干预。所收集的数据将直接告知未来的发展， 将对基于医院的KRT决策辅助干预和由此产生的决策辅助进行验证和测试， 评估其对KRT决策的影响，包括采用家庭透析方式和肾移植。

PROJECT SUMMARY Chronic kidney disease is a significant public health threat in the U.S. and the ninth leading cause of death. In 2018, more than 15% of U.S. adults had chronic kidney disease and more than 785,000 had advanced to end- stage kidney disease (ESKD), requiring kidney replacement therapy (KRT) for survival. In 2018, approximately 85% of patients with ESKD received in-center hemodialysis as their primary KRT despite inferiority in terms of quality-of-life, cost of care, and survival compared to home dialysis modalities or kidney transplant. Additionally, in 2018, 80.8% of patients with ESKD began KRT with a central venous catheter (the least preferred dialysis access) and 46.0-74.7% have been reported to start KRT in the inpatient setting. This is thought to be, in part, due to a lack of KRT education provided to patients with ESKD across all care settings, impeding their ability to make informed treatment decisions. Moreover, approximately one third of patients who reach ESKD had no prior planning or nephrology care. Patients with unexpected ESKD suffer from increased morbidity and mortality, have limited access to kidney transplantation, and are less likely to be informed of KRTs than patients with planned KRT initiation. Providing KRT education during the KRT initiation hospitalization for patients with unexpected ESKD, who had no pre-ESKD nephrology care and never saw an outpatient CKD clinic, closes an important gap in patient education. To date, no-one in the U.S. has developed a hospital-based education intervention for patients hospitalized for KRT initiation to increase the proportion of patients opting for home dialysis or kidney transplant. Using a community engaged approach, this proposal will conduct the formative work required to develop a hospital-based KRT decision-aid targeted to patients who initiate KRT unplanned and in the hospital. Therefore, this proposal aims to: (1) Conduct a review of the literature to synthesize existing patient reported information needs for treatment decision-making among patients with advanced chronic kidney disease; (2) Using a community engaged approach, identify the KRT information and decision-making needs and assets of patients with and without a history of pre-ESKD nephrology care hospitalized for KRT initiation; and (3) Identify U.S. locations, specifically within the Southeastern U.S. (Georgia, North Carolina, South Carolina), that have limited pre-ESKD care and create heat maps to describe geographic variability in the receipt of pre-ESKD care to identify hospital sites for testing and implementation of a future intervention. The collected data will directly inform the future development of a hospital-based KRT decision aid intervention and the resulting decision aid will be validated and tested to assess its impact on KRT decisions, including uptake of home dialysis modalities and kidney transplant.