Uncertainty management in patients awaiting liver transplant

丙型肝炎病毒是美国最常见的血液传播感染，影响至少400万人 每年新增病例超过19，000例。此外，CDC预计， 1990年至2015年间，慢性丙型肝炎患者数量增加了四倍， 有发展为终末期肝病（ESLD）的风险。到2015年，估计有375，000例慢性丙型肝炎 患者将发展为肝硬化并进展为ESLD，代表了大多数需要肝脏的个体。 移植ESLD是一种限制生命的疾病，患者被告知，如果不进行肝移植，他们可能会死亡。 这项为期5年的随机对照试验将测试不确定性管理干预的有效性 由护士通过电话传递给患者和护理者。一组患者的注意力控制组， 护理人员将接到电话，讨论他们等待肝脏移植的经历。基于 等待肝移植的患者的问题和担忧以及先前的干预成功， 对于患有严重慢性病的患者，我们认为不确定性管理干预措施 将显著改善患者和护理人员的能力， 管理与ESLD相关的症状和痛苦以及等待肝脏移植的过程。 具体目的是：1）检验不确定性管理干预对患者的影响 心理困扰结果，不确定感管理，症状控制，症状自我效能 管理和生活质量相比，注意力控制组接受电话讨论他们的疾病 经验; 2）探讨干预措施对照顾者不确定性管理结果的影响， 与注意力控制相比，帮助患者管理症状的自我效能和更好的QOL （3）确定干预措施特别有效的个人特征。 在不确定的条件下等待肝移植对患者来说是一种痛苦的经历， 护理人员，但很少有人尝试测试护理干预ESLD患者。整体 该项目的目标是为这些患者及其护理人员提供自我管理其复杂的工具 性问题预期结果是等待肝移植的ESLD患者从不确定性中获益 管理干预，从而为从业人员和决策者提供新的知识。

Hepatitis C Virus is the most common blood-borne infection in the U.S., affecting at least 4 million individuals, with more than 19,000 new cases occurring each year. Further, the CDC has projected a fourfold increase in the number of chronic hepatitis C patients between 1990 and 2015, and these patients are at risk for developing end stage liver disease (ESLD). By 2015 an estimated 375,000 chronic hepatitis C patients will develop cirrhosis and progress to ESLD, representing the majority of individuals who need liver transplants. ESLD is a life-limiting illness, and patients are told that, without a liver transplant, they may die. This 5 year randomized controlled trial will test the efficacy of an Uncertainty Management Intervention delivered via telephone by a nurse to the patient and caregiver. An attention control group of patients and caregivers will receive phone calls to discuss their experience of awaiting a liver transplant. Based on the problems and concerns of patients waiting for a liver transplant and the prior success of the Intervention for patients dealing with serious chronic illness, we believe the Uncertainty Management Intervention adapted specifically for ESLD patients will lead to significant improvements in patients' and caregivers' abilities to manage the symptoms and distress associated with ESLD and the process of awaiting liver transplant. The specific aims are to: 1) examine the effects of the Uncertainty Management Intervention on patient outcomes'of psychological distress, uncertainty management, symptom control, self efficacy for symptom management, and QOL compared to an attention control group receiving calls to discuss their disease experience; 2) explore the effects of the Intervention on caregiver outcomes of uncertainty management, self-efficacy for helping the patient manage symptoms, and better QOL compared to an attention control group; 3) identify characteristics of individuals for whom the intervention is particularly effective. Waiting for a liver transplant under conditions of uncertainty is a harrowing experience for patients and caregivers, yet there have been few attempts to test nursing interventions for ESLD patients. The overall goal of this project is to provide these patients and their caregivers the tools to self-manage their complex concerns. The anticipated outcome is ESLD patients awaiting liver transplant benefit from the Uncertainty Management Intervention, thus providing new knowledge for practitioners and policy makers.