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，影响到至少400万人 每年有19,000多例新病例发生。此外，疾控中心预计 1990至2015年间，慢性丙型肝炎患者的数量增加了四倍，这些患者 有发生终末期肝病(ESLD)的风险。到2015年，估计有375,000名慢性丙型肝炎患者 患者会发展成肝硬变并进展到ESLD，这代表了大多数需要肝脏的人。 移植。ESLD是一种限制生命的疾病，患者被告知，如果不进行肝脏移植，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病人和护理者。一组患者和注意控制组 护理者将接到电话，讨论他们等待肝脏移植的经历。基于 等待肝移植患者的问题和担忧以及介入治疗的前期成功 患有严重慢性病的患者，我们认为不确定性管理干预适合 特别是对于ESLD患者，将导致患者和照顾者能力的显着改善 处理与ESLD相关的症状和痛苦以及等待肝移植的过程。 具体目的是：1)考察不确定性管理干预对患者的影响 心理困扰结局、不确定性管理、症状控制、症状自我效能感 管理和生活质量与接受电话讨论其疾病的注意力控制组进行比较 2)探讨干预对不确定性管理中照顾者结局的影响。 帮助患者管理症状的自我效能感，以及比注意力控制更好的生活质量 3)确定干预对其特别有效的个人的特征。 在不确定的条件下等待肝脏移植对患者和 然而，很少有人尝试测试针对ESLD患者的护理干预措施。整体而言 这个项目的目标是为这些患者和他们的照顾者提供自我管理他们的综合体的工具 担忧。预期的结果是等待肝移植的eSLD患者从不确定性中受益。 管理干预，从而为从业者和政策制定者提供新的知识。

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.