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

疼痛

• 批准号: 7359928
• 负责人: LISSI HANSEN
• 金额: $ 7.7万
• 依托单位: OREGON HEALTH & SCIENCE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2007
• 资助国家: 美国
• 起止时间: 2007-09-29 至 2009-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7359928
• 关键词: Alcohols; Ambulatory Care Facilities; American; Cancer Patient; Caring; Characteristics; Classification; Clinic; Colon Carcinoma; Data; Disease; Distress; Drug abuse; Enrollment; Etiology; Family member; Fright; Goals; Health Personnel; Hepatic Encephalopathy; Hepatology; Home environment; Hospitals; Impairment; Individual; Intervention; Interview; Knowledge; Link; Liver; Liver diseases; Location; Lung; Malignant Neoplasms; Measurement; Medical Records; Medical center; Methods; Modeling; NIH Program Announcements; Outcome; Outpatients; Pain; Pain Research; Pain management; Patients; Pattern; Perception; Pharmaceutical Preparations; Pilot Projects; Population; Population Heterogeneity; Purpose; Recording of previous events; Reporting; Research; Research Design; Risk; Sampling; Science; Source; Staging; Standards of Weights and Measures; Symptoms; Testing; Time; United States National Institutes of Health; Veterans; Woman; base; day; drug metabolism; end of life; end of life care; experience; improved; innovation; instrument; liver transplantation; outcome forecast; preference; programs; prospective; statistics; symposium; symptom management

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.

描述（由申请人提供）：令人惊讶的是，人们对终末期肝病（ESLD）患者在生命结束时经历的疼痛和其他痛苦症状以及他们的家庭成员照顾他们的经历知之甚少。这是特别麻烦的，因为死于ESLD的患者报告的疼痛与晚期肺癌和结肠癌患者经历的疼痛水平相当。由于肝损害与药物代谢的改变或减少有关，许多ESLD患者有酒精和药物滥用的既往史，因此医疗保健提供者可能会因为担心肝脏疾病并发症而对这一人群的疼痛治疗不足。然而，患者在生命结束时经历疼痛和其他痛苦症状的方式以及 他们和在家中照顾他们的家庭成员对症状的管理是有效管理疼痛和症状的基本知识。这个创新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。定性和定量方法将用于检查ESLD患者在生命结束时经历的疼痛和其他痛苦症状的复杂性。拟定研究有两个具体目的：（1）描述患者及其家属认为的终末期ESLD患者的疼痛特征和其他症状随时间的变化模式;（B）描述患者及其家属使用的药理学和非药理学疼痛和症状管理策略。这第一步是实现改善ESLD患者生命末期疼痛和症状控制的长期目标所必需的。20例处于生命末期的ESLD患者及其20名家庭成员（N = 40）的样本将通过转诊中心医院的门诊入组，并对肝病患者进行肝移植计划。将在6个月内的6个时间点使用开放式问题、在诊所/家庭访谈期间完成的标准化工具和病历审查收集数据。定性描述将是定性数据的分析方法。定量数据的分析方法将是描述性统计和推断性统计。