Dialysis decision-making among adults with advanced kidney disease

项目总结/摘要 维持性透析是终末期肾衰竭患者的一种潜在的延长生命的治疗形式， 疾病（ESRD）。然而，透析也经常需要显著的生活方式改变，并且与 开始后住院率高，身体和社会功能受损。对于老年患者， 严重合并症，透析可能不会有意义地延长生存期，并与较差的生活质量相关 与晚期肾病的姑息治疗方法如临终关怀相比， 透析的决定是非常复杂的。在先前的定性研究中，晚期 慢性肾脏病（CKD）患者对透析是否适合他们表示了极大的不确定性。从 从提供者的角度来看，在类似的定性访谈中，肾科医生表示沮丧和绝望， 照顾那些不愿意采取行动为终末期肾病做准备的患者。 在此，我提出了一个系统的研究议程，利用当地和国家的研究人口和 混合方法的方法与定量和定性的研究技术，以调查的潜力 患者关于ESRD治疗的决策不确定性的介质以及这种不确定性如何影响 ESRD的后续治疗实践和结局。在目标1中，我将利用全面的国家 退伍军人健康管理局（VA）的电子病历进行深入的图表审查， 对一个国家队列中记录的患者-提供者关于ESRD治疗的讨论进行内容分析， 晚期CKD患者，以确定这些讨论的特征， 患者对这些治疗决定的不确定性。病历是一个重要的记录， 医疗保健互动，问责制和沟通，并提供了一个独特的Vantage位置，以检查 治疗讨论，因为他们在临床背景下展开。我将使用我在年开发的小说文本搜索软件， 我的初步工作是对每个病人的病历进行详细的审查。这项工作的结果将 提供关于如何进行患者-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，我将评估关于治疗的决策不确定性的负担， 使用经验证的测量工具在不同的西雅图晚期CKD患者队列中评估ESRD 决策的不确定性。我将测试这些措施与前瞻性收集的信息之间的关联， 透析开始的条件以及姑息和临终关怀的利用，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的过程中采访患者-肾病学家配对，以确定他们对 以及关于ESRD治疗的决策过程的促进者，认识到 并且可以随时间改变。这项工作的结果将为今后的干预措施提供基础， 患者准备好面对关于ESRD的治疗决定，并根据患者的不同需求定制 患者和供应商。

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.