Dialysis decision-making among adults with advanced kidney disease

项目摘要/摘要 维持性透析是一种可能延长终末期肾病患者生命的治疗方法 疾病(ESRD)。然而，透析也经常需要显著改变生活方式，并与 入院后住院率高，身体和社会功能受损。对于年长的患者 严重的合并症，透析可能不会有意义地延长生存期，并与较差的生活质量有关 与临终关怀等更姑息治疗终末期肾病的方法相比。 关于透析的决定非常复杂。在先前的定性研究中，晚期糖尿病患者 慢性肾脏疾病(CKD)表现出对透析是否适合他们的极大不确定性。从 从提供者的角度来看，在类似的定性访谈中，肾病学家在以下情况下表示沮丧和绝望 照顾那些不愿采取行动为ESRD做准备的患者。 在这里，我提出了一个系统的研究议程，使用地方和国家的研究人群和一个 结合定量和定性研究技术的混合方法来研究潜力 患者对终末期肾病治疗的决策不确定性的中介以及这种不确定性可能如何影响 终末期肾病的后续治疗实践和结果。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，以执行深入的图表审查和 关于终末期肾病治疗的有记录的患者-提供者讨论的内容分析 以确定与这些讨论的特征相关的晚期CKD患者 患者对这些治疗决定的不确定性。病历是……的重要记录。 医疗保健互动、责任和沟通，并提供了一个独特的优势来检查 在临床背景下展开的治疗讨论。我将使用我在中开发的新奇文本搜索软件 我的初步工作是对每个病人的医疗记录进行详细的审查。这项工作的发现将 提供有关如何处理患者-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，我将评估有关治疗的决策不确定性的负担 使用经验证的仪器测量在西雅图晚期CKD患者的不同队列中的ESRD 决策的不确定性。我将测试这些措施与预期收集的信息之间的关联 透析条件的启动和姑息治疗和临终关怀的利用 患者的不确定性可能会改善终末期肾病的治疗实践和结果。对于目标3，我将连续 在晚期慢性肾脏病病程中采访患者-肾病学家二人组，以确定他们感知的障碍 以及关于终末期肾病治疗的决策进程的促进者，认识到 并且可以随着时间的推移而改变。这项工作的发现将为未来的干预措施提供基础， 患者是否愿意面对有关终末期肾病的治疗决定，这些决定是根据患者的不同需求量身定做的 患者和提供者。

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.