Dialysis decision-making among adults with advanced kidney disease

患有晚期肾病的成人的透析决策

• 批准号: 9180143
• 负责人: Susan Pamela Wong
• 金额: $ 17.7万
• 依托单位: UNIVERSITY OF WASHINGTON
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-09-01 至 2021-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9180143
• 关键词: Accountability; Acute; Address; Adult; American; Caring; Catheters; Characteristics; Chronic Kidney Failure; Clinic; Clinical; Communication; Comorbidity; Complex; Computer software; Computerized Medical Record; Counseling; Data; Decision Making; Dialysis procedure; Documentation; Employment; End stage renal failure; Face; Feeling hopeless; Fostering; Foundations; Frustration; Future; Goals; Health; Health Personnel; Healthcare; Hemodialysis; Hospice Care; Hospitalization; Impairment; Intervention; Interview; Kidney; Kidney Diseases; Kidney Transplantation; Life; Life Style; Life Support Care; Link; Maintenance; Measures; Mediator of activation protein; Medical; Medical Records; Methods; Modeling; Outcome; Palliative Care; Patient Care; Patients; Physical Function; Process; Prospective Studies; Provider; Public Health; Qualitative Research; Quality of life; Readiness; Registries; Reporting; Research; Research Technics; Role; Social Functioning; Surveys; Testing; Therapeutic; Time; Uncertainty; Veterans; Work; base; cohort; experience; health administration; hospice environment; improved; insight; instrument; novel; older patient; palliative; programs; shared decision making; skills; social; study population; text searching

PROJECT SUMMARY/ABSTRACT Maintenance dialysis is a form of potentially life-prolonging treatment for patients with end-stage renal disease (ESRD). However, dialysis also often demands significant lifestyle changes, and is associated with high rates of hospitalization and impaired physical and social function after initiation. For older patients with severe comorbidity, dialysis may not meaningfully lengthen survival and is associated with poorer quality-of-life as compared with more palliative approaches for ESRD, such as hospice. Decisions on dialysis are extraordinarily complex. In prior qualitative studies, patients with advanced chronic kidney disease (CKD) express significant uncertainty about whether dialysis is right for them. From the provider perspective, in similar qualitative interviews, nephrologists express frustration and hopelessness when caring for patients who are reluctant to take action to prepare for ESRD. Herein I propose a systematic research agenda using local and national study populations and a mixed-methods approach with quantitative and qualitative research techniques to investigate the potential mediators of patients' decisional uncertainty regarding treatment of ESRD and how this uncertainty may impact subsequent treatment practices and outcomes for ESRD. In Aim 1, I will leverage the comprehensive national electronic medical record of the Veterans Health Administration (VA) to perform an in-depth chart review and content analysis of documented patient-provider discussions on treatment of ESRD for a national cohort of patients with advanced CKD to determine the characteristics of these discussions that are associated with patients' uncertainty about these treatment decisions. The medical chart serves as an important record of healthcare interactions, accountability and communication, and provides a unique vantage point to examine treatment discussions as they unfold in clinical context. I will use novel text search software that I developed in my preliminary work to conduct a detailed review of each patient's medical record. The findings of this work will provide new insights into how to approach patient-provider discussions in order to better support patients with decisional uncertainty. For Aim 2, I will evaluate the burden of decisional uncertainty regarding treatment of ESRD in a diverse Seattle-based cohort of patients with advanced CKD using validated instruments measuring decisional uncertainty. I will test the association of these measures with prospectively collected information on conditions of dialysis initiation and utilization of palliative and hospice care to elucidate how addressing patients' uncertainty might improve treatment practices and outcomes for ESRD. For Aim 3, I will serially interview patient-nephrologist dyads over the course of advanced CKD to determine their perceived barriers to and facilitators of the decision-making process regarding treatment of ESRD, recognizing that decisions unfold and can change over time. The findings of this work will provide the basis for future interventions that enhance patients' readiness to face treatment decisions about ESRD and that are tailored to the distinct needs of patients and providers.

项目概要/摘要 维持性透析是终末期肾病患者潜在的延长生命的一种治疗方式 疾病（终末期肾病）。然而，透析通常也需要显着改变生活方式，并且与 开始治疗后住院率高，身体和社会功能受损。对于老年患者 严重的合并症，透析可能不会有意义地延长生存期，并且与较差的生活质量相关 与临终关怀等更多针对 ESRD 的姑息治疗方法相比。 关于透析的决定极其复杂。在之前的定性研究中，晚期患者 慢性肾病（CKD）患者对于透析是否适合他们表现出很大的不确定性。从 从提供者的角度来看，在类似的定性访谈中，肾病专家在以下情况时表达了沮丧和绝望： 照顾那些不愿意采取行动为 ESRD 做准备的患者。 在此，我提出了一个使用当地和国家研究人群的系统研究议程以及 采用定量和定性研究技术的混合方法来调查潜力 患者关于 ESRD 治疗的决策不确定性的中介因素以及这种不确定性如何影响 ESRD 的后续治疗实践和结果。在目标 1 中，我将利用国家综合 退伍军人健康管理局 (VA) 的电子病历，以进行深入的图表审查和 对国家队列中记录的患者与提供者关于 ESRD 治疗的讨论进行内容分析 患有晚期 CKD 的患者，以确定这些与以下相关的讨论的特征 患者对这些治疗决定的不确定性。病历是重要的记录 医疗保健互动、责任和沟通，并提供了一个独特的有利位置来检查 在临床背景下展开的治疗讨论。我将使用我开发的小说文本搜索软件 我的前期工作是对每个病人的病历进行详细审查。这项工作的结果将 提供有关如何进行患者与提供者讨论的新见解，以便更好地支持患者 决策的不确定性。对于目标 2，我将评估有关治疗的决策不确定性的负担 使用经过验证的仪器测量西雅图不同晚期 CKD 患者的 ESRD 水平 决策的不确定性。我将测试这些措施与前瞻性收集的信息的关联 透析开始的条件以及姑息治疗和临终关怀的使用，以阐明如何解决 患者的不确定性可能会改善 ESRD 的治疗实践和结果。对于目标3，我将连续 在晚期 CKD 过程中采访患者与肾病专家二人，以确定他们认为的障碍 和 ESRD 治疗决策过程的推动者，认识到决策的展开 并且会随着时间的推移而改变。这项工作的结果将为未来的干预措施提供基础，以加强 患者是否准备好面对有关 ESRD 的治疗决定，并且这些决定是根据患者的独特需求量身定制的 患者和提供者。