Symptoms and Symptom Clusters in End Stage Chronic Disease

描述(申请人提供)：心脏病、阻塞性肺疾病、癌症、脑血管疾病、慢性肝病和痴呆症等多种慢性最终致命性疾病的晚期患者可能会同时出现多种由疾病、疾病治疗或其组合引起的症状。然而，这些重大慢性病症状之间的复杂关系还没有得到很好的描述，多个症状对重要结果的影响也没有得到评估。这项试验性探索性研究使用症状簇分析的创新方法，重点关注老年人在一种慢性最终致命疾病-心力衰竭(HF)的晚期所经历的症状。症状聚类分析是一种多变量统计技术，它将根据症状苦恼的评级来识别具有相似症状模式的个体集群。将采用纵向描述性设计。120名终末期心力衰竭患者的样本将从三个环境中招募：临终关怀和姑息计划、心力衰竭病例管理计划和心力衰竭治疗诊所。数据将通过访谈的形式在参与者的家中收集一次。患者变量包括症状(包括频率、严重程度和痛苦)、所有疼痛部位、身体、社会和心理功能以及合并症。将在6个月内进行纵向随访，对死亡证明进行分析，以确定样本中谁已经死亡。通过识别死亡的参与者，我们将能够确定那些死亡和没有死亡的人的症状群是否不同，以及在那些死亡的人中，症状群是否作为死亡前几个月的函数而变化。分析包括个别症状和症状群与选定变量的相关性，以及确定死亡前时间的症状群预测因子的多变量分析。这项研究的结果将为未来对终末期心力衰竭患者和其他慢性最终致命疾病患者的症状进行纵向研究奠定基础。研究结果可能会为确定潜在的致病机制提供潜在的方向。有关死亡前几个月的症状及其模式的信息对于制定急需的心衰姑息治疗策略至关重要。公共卫生相关性：作为美国主要的死亡原因之一，也是唯一一种发病率、患病率和死亡率都在上升的心脏病，心衰日益成为公共卫生关注的问题。终末期心力衰竭的症状负担很高，增加了患者和家属的痛苦，并增加了医疗费用。

DESCRIPTION (provided by applicant): Patients in the advanced stage of several chronic eventually-fatal diseases, including heart disease, obstructive lung disease, cancer, cerebral vascular disease, chronic liver disease and dementia may experience multiple concurrent symptoms caused by the disease, disease treatment, or their combination. Yet, the complex relationships between and among symptoms in these major chronic diseases have not been well described and the impact of multiple symptoms on important outcomes have not been evaluated. This pilot exploratory study focuses on symptoms experienced by older adults in the advanced stage of one chronic eventually-fatal disease, heart failure (HF), using the innovative approach of symptom clusters analysis. Symptom cluster analysis is a multivariate statistical technique, which will identify clusters of individuals with similar patterns across symptoms based on their ratings of symptom distress. A longitudinal descriptive design will be used. A sample of 120 patients with end-stage HF will be recruited from three settings: a hospice and palliative program, a heart failure case management program, and a heart failure treatment clinic. Data will be collected once in participants' homes using an interview format. Patient variables include symptoms (including frequency, severity and distress), all sites of pain, physical, social, and psychological functioning, and co-morbidities. Longitudinal follow-up will occur in 6 months with an analysis of death certificates to determine who in the sample has died. By identifying participants who die, we will be able to determine whether symptom clusters differ for those who do and do not die, and among those who die, whether symptoms clusters vary as a function of the number of months prior to death. Analyses include correlation of individual symptoms and symptom clusters to selected variables, and multivariate analysis to determine symptom cluster predictors of time before death. The results of this study will provide the foundation for future longitudinal studies of symptoms in patients with end-stage HF and in patients with other chronic eventually-fatal conditions. Study results may suggest potential direction for identifying underlying causative mechanisms. Information on symptoms and their patterns in the months preceding death will be essential for developing the much-needed palliative strategies for HF. PUBLIC HEALTH RELEVANCE: As one of the leading causes of death in the U.S. and the only heart disease whose incidence, prevalence, and mortality are increasing, HF is a growing public health concern. Symptom burden is high in end-stage HF and adds to the suffering of patients and families and to the cost of medical care.