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

建立基础，为因意外终末期肾病住院的患者开发治疗决策辅助工具：社区参与的方法

• 批准号: 10387145
• 负责人: Megan Urbanski
• 金额: $ 3.83万
• 依托单位: EMORY UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-07-01 至 2022-12-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10387145
• 关键词: Address; Adult; American; Black race; Canada; Caring; Catheters; Cause of Death; Censuses; Chronic Kidney Failure; Clinic; Code; Communication; Communities; Community Surveys; Data; Decision Aid; Decision Making; Development; Diagnosis; Dialysis procedure; Education; Educational Intervention; End stage renal failure; Ethnic Origin; Europe; Feedback; Focus Groups; Foundations; Future; Geographic Locations; Geography; Goals; Guidelines; Health; Health education; Health system; Hemodialysis; Hispanic; Home; Hospitalization; Hospitals; Inferior; Inpatients; Intervention; Interview; Kidney; Kidney Transplantation; Knowledge; Length of Stay; Literature; Location; Maps; Modality; Modeling; Morbidity - disease rate; Nephrology; North Carolina; Not Hispanic or Latino; Organ failure; Outpatients; Participant; Pathway interactions; Patient Education; Patient Representative; Patients; Philadelphia; Preparation; Provider; Public Health; Quality of life; Race; Recording of previous events; Renal Replacement Therapy; Reporting; Research; Research Personnel; Review Literature; Site; Socioeconomic Status; South Carolina; Stress and Coping; Structure; Testing; Time; Venous; Work; base; care costs; design; end-stage organ failure; ethnic minority; experience; informant; interest; mortality; multidisciplinary; patient subsets; pilot test; preference; programs; racial and ethnic; sex; shared decision making; skill acquisition; system-level barriers; theories; training opportunity; transplant centers; treatment duration; uptake

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.

项目概要 慢性肾病是美国的一个重大公共卫生威胁，也是第九大死因。在 2018 年，超过 15% 的美国成年人患有慢性肾病，超过 785,000 人已发展至晚期 阶段肾病 (ESKD)，需要肾脏替代治疗 (KRT) 才能生存。 2018年，大约 85% 的 ESKD 患者接受中心血液透析作为主要 KRT，尽管其效果较差 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，2018 年，80.8% 的 ESKD 患者开始使用中心静脉导管进行 KRT（最少） 据报道，46.0-74.7% 的患者在住院环境中开始 KRT。这是 部分原因被认为是由于所有护理机构中缺乏向 ESKD 患者提供的 KRT 教育， 妨碍他们做出明智的治疗决定的能力。此外，大约三分之一的患者 没有事先计划或肾脏病护理达到 ESKD。患有意外 ESKD 的患者的病情增加 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 KRT 优于计划开始 KRT 的患者。在 KRT 启动期间提供 KRT 教育 意外患有 ESKD 的患者住院治疗，这些患者没有接受过 ESKD 前肾病治疗，也从未看过治疗 CKD 门诊弥补了患者教育方面的重要空白。迄今为止，美国还没有人开发出 对住院接受 KRT 治疗的患者进行基于医院的教育干预，以提高接受 KRT 治疗的比例 选择家庭透析或肾移植的患者。通过社区参与的方式，该提案将 开展必要的形成工作，开发基于医院的 KRT 决策援助，针对以下患者： 在医院中计划外启动 KRT。因此，本建议旨在： (1) 对 文献综合现有患者报告的信息需求，以供患者做出治疗决策 晚期慢性肾脏病患者； (2) 使用社区参与的方法，确定 KRT 有或无 ESKD 病史的患者的信息和决策需求以及资产 因 KRT 启动而住院的肾脏科护理； (3) 确定美国的位置，特别是在 美国东南部（乔治亚州、北卡罗来纳州、南卡罗来纳州）的 ESKD 前护理有限并产生热量 绘制地图来描述接受 ESKD 前护理的地理差异，以确定进行测试和治疗的医院地点 实施未来的干预措施。收集到的数据将直接影响未来的发展 基于医院的 KRT 决策援助干预以及由此产生的决策援助将经过验证和测试，以 评估其对 KRT 决策的影响，包括家庭透析方式和肾移植的采用。