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.

项目总结 慢性肾脏疾病在美国是一个重大的公共健康威胁，是第九大主要死亡原因。在……里面 2018年，超过15%的美国成年人患有慢性肾脏疾病，超过78.5万人已进入晚期- 肾病(ESKD)阶段，需要肾脏替代疗法(KRT)才能存活。2018年，大约 85%的ESKD患者接受中心血液透析作为他们的主要KRT，尽管在以下方面表现较差 与家庭透析或肾移植相比，生活质量、护理成本和存活率都有所提高。 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，有46.0-74.7%的患者在住院环境中开始了KRT。这是 人们认为，部分原因是在所有护理环境中，缺乏对ESKD患者的KRT教育， 妨碍他们作出知情治疗决定的能力。此外，大约三分之一的患者 REACH ESKD没有事先计划或肾脏疾病护理。患有意外ESKD的患者 发病率和死亡率，接受肾移植的机会有限，而且不太可能被告知 KRT比计划启动KRT的患者更多。在幼稚园入会期间提供幼稚园教育 意外ESKD患者的住院治疗，这些患者没有ESKD前肾脏内科护理，也从未见过 CKD门诊，填补了患者教育方面的一个重要空白。到目前为止，美国还没有人开发出 以医院为基础的教育干预对启动KRT患者的影响 患者选择家庭透析或肾脏移植。使用社区参与的方法，这项建议将 进行必要的形成性工作，以开发以医院为基础的KRT决策辅助工具，面向以下患者 在计划外和医院内启动KRT。因此，这项建议的目的是：(1)检讨 综合现有患者报告的信息需求进行治疗决策的文献 晚期慢性肾脏疾病患者；(2)使用社区参与的方法，确定KRT 有和没有ESKD前病史的患者的信息和决策需求及资产 因KRT入院治疗的肾脏病护理；以及(3)确定美国的地点，特别是在 美国东南部(佐治亚州、北卡罗来纳州、南卡罗来纳州)，ESKD前护理有限，并产生高温 描述接受ESKD前护理的地理变异性的地图，以确定要进行测试和 实施未来的干预措施。收集的数据将直接为未来的发展提供信息 基于医院的KRT决策辅助干预和由此产生的决策辅助将经过验证和测试，以 评估其对KRT决策的影响，包括采用家庭透析方式和肾移植。