Pain & Other Symptoms in Patients with End-Stage Liver Disease at End of Life

描述(由申请人提供)：令人惊讶的是，人们对终末期肝病(ESLD)患者在生命末期经历的疼痛和其他令人痛苦的症状以及他们的家人照顾他们的经历知之甚少。这特别麻烦，因为死于ESLD的患者报告的疼痛程度与晚期肺癌和结肠癌患者的疼痛水平相当。由于肝脏损伤与药物代谢改变或降低有关，而且许多ESLD患者以前有酗酒和药物滥用的病史，因此医疗保健提供者可能会因担心使肝脏疾病复杂化而对这一人群的疼痛治疗不足。然而，患者在生命末期经历疼痛和其他令人痛苦的症状的方式 他们和在家照顾他们的家人对症状的管理是有效疼痛和症状管理的基本知识。这一创新提出的试点项目是第一个使用前瞻性、纵向描述性研究设计的研究。将使用定性和定量方法来检查ESLD患者在生命末期经历的疼痛和其他令人痛苦的症状的复杂性。这项拟议的研究有两个具体目标：(1)描述ESLD患者及其家人在生命结束时疼痛特征和其他症状随时间的变化模式；(B)描述患者及其家人所使用的药理学和非药理学疼痛和症状管理策略。这第一步是为了实现改善ESLD患者生命末期疼痛和症状控制的长期目标。20名生命即将结束的ESLD患者及其20名家庭成员(N=40)的样本将通过作为转诊中心的医院的门诊登记，以及为肝病患者提供肝脏移植计划。数据将在6个月内的6个时间点收集，使用开放式问题、诊所/家庭访谈期间完成的标准化工具和医疗记录审查。定性描述将是对定性数据的分析方法。描述性统计和推理式统计将是对定量数据的分析方法。

DESCRIPTION (provided by applicant): Surprisingly little is known about pain and other distressing symptoms experienced by patients' with end stage liver disease (ESLD) at the end of life and about the experience of their family members caring for them. This is particularly troublesome because patients dying with ESLD report pain comparable to the level of pain experienced by patients with advanced lung and colon cancer. Because liver impairment is associated with altered or decreased drug metabolism and many patients with ESLD have a prior history of alcohol and drug abuse, health care providers may undertreat pain in this population for fear of complicating the liver disease. Yet, the ways in which patients experience pain and other distressing symptoms at the end of life and the management of symptoms by them and the family members who care for them at home is essential knowledge for effective pain and symptom management. This innovative proposed pilot project is the first study to use a prospective, longitudinal descriptive study design. Both qualitative and quantitative methods will be used to examine the complexity of pain and other distressing symptoms experienced at the end of life by patients with ESLD. The proposed study has two specific aims: (1) to describe patterns of change over time in pain characteristics and other symptoms in patients with ESLD at the end of life as perceived by patients and their family members and (b) to describe pharmacological and non-pharmacological pain and symptom management strategies used by patients and their family members. This first step is needed to accomplish the long-term goal of improving pain and symptom control at the end of life for patients with ESLD. A sample of 20 patients with ESLD who are at the end of life and 20 of their family members (N = 40) will be enrolled through an outpatient clinic at a hospital that is a referral center, as well as having a liver transplant program for patients with liver disease. Data will be collected at 6 time points over a 6-month period using open-ended questions, standardized instruments completed during clinic/home interviews, and medical record reviews. Qualitative description will be the method of analysis for the qualitative data. Descriptive and inferential statistics will be the methods of analysis for the quantitative data.