Influence of Race, Gender, Rurality, and Dyadic Health on Symptom Trajectories in Persons with Advanced Heart Failure

项目摘要 心力衰竭影响着超过650万成年人，而且这个数字正在迅速增长，特别是在多样化和 南方农村人口的健康差距非常普遍。虽然患者可以受益于 建议在诊断晚期心力衰竭时进行姑息治疗整合，大多数患者转诊较晚- 如果有话。心力衰竭姑息治疗的一个主要目标是积极的症状管理， 护理人员在其中发挥着不可或缺的作用。为晚期心力衰竭患者及其家属提供更优质的护理 护理人员，至关重要的是要有关于疾病和症状轨迹的信息，以制定个性化的 治疗计划，并建立与患者目标一致的护理。心力衰竭患者报告多达19 共现症状;然而，描述共现症状模式的研究有限 轨迹此外，关于这些症状与患者的关系的信息很少 和照顾者的生活质量的个体和作为一对。这项拟议的研究将解决这一问题 研究差距，并提供有关晚期心力衰竭症状模式轨迹的定量数据，包括 照顾者支持的影响。最终目标是发展症状管理姑息治疗 改善症状负担的干预措施。这项研究利用了从父母那里收集的现有数据 ENABLE：CHF-PC（教育，培育，建议，生命结束前，为患者提供全面的心脏护理， 护理人员; 5 R 01 NR 013665; Bakitas PI）多中心随机对照试验。ENABLE CHF PC具有 远程保健、针对南方得不到充分服务的人口和农村人口的姑息治疗干预。拟定的研究将 使用潜变量模型检查来自该母研究（3个时间点）的纵向症状数据 分析，以解决独特的具体目标：1）识别和隔离不同的症状模式轨迹， 生活在南方腹地的晚期心力衰竭老年人姑息治疗干预参与者; 2） 量化社会人口特征（如种族、性别、农村和二元）之间的关联 健康）、临床/生理特征和症状模式轨迹。这项拟议的研究是 符合国家护理研究所促进个性化健康策略的目标 并帮助管理和缓解症状和痛苦的姑息和生命结束设置为不同的 人口。该NRSA提案将作为申请人发展目标的重要基础， 一个独立的护理科学家与研究计划，旨在改善生活质量和症状 心力衰竭患者及其家庭照顾者的负担，通过这种姑息治疗模式， 申请人提出的培训计划、亚拉巴马大学伯明翰分校提供的资源，以及 对姑息治疗、家庭照顾者、心力衰竭症状的相关概念进行指导指导 管理，健康差距，护理科学，先进的统计分析和科学传播。

Project Summary Heart failure affects over 6.5 million adults and that number is quickly growing, especially in the diverse and rural Southern populations where health disparities are highly prevalent. While patients could benefit from recommended palliative care integration at diagnosis of advanced heart failure, most patients are referred late- if at all. A major goal of palliative care in heart failure is aggressive symptom management which family caregivers play an integral role in. To provide better quality care for advanced heart failure patients and family caregivers, it is crucial to have information on disease and symptom trajectories to develop an individualized treatment plan and to establish care consistent with patients' goals. Heart failure patients report as many as 19 co-occurring symptoms; however, there is limited research characterizing co-occurring symptom pattern trajectories. Furthermore, there is little information about the relationship of these symptoms with the patient and caregiver's quality of life individually and as a dyad. This proposed research study will address this research gap and provide quantitative data on advanced heart failure symptom pattern trajectories including the impact of caregiver support. The ultimate goal is to develop symptom management palliative care interventions which improve symptom burden. This study leverages existing data collected from the parent ENABLE: CHF-PC (Educate, Nurture, Advise, Before Life Ends, Comprehensive Heartcare for Patients and Caregivers; 5R01NR013665; Bakitas PI) multisite randomized controlled trial. ENABLE CHF PC featured a telehealth, palliative care intervention for Southern underserved and rural populations. The proposed study will examine longitudinal symptom data from this parent study (3 time points) using latent variable modeling analyses to address the unique specific aims: 1) identify and segregate distinct symptom pattern trajectories in older adult palliative care intervention participants with advanced heart failure living in the Deep South and 2) quantify associations between sociodemographic characteristics (such as race, gender, rurality, and dyadic health), clinical/physiological characteristics, and symptom pattern trajectories. This proposed study is consistent with the National Institute of Nursing Research goals of promoting personalized health strategies and helping to manage and relieve symptoms and suffering in the palliative and end of life setting for diverse populations. This NRSA proposal will serve as an essential foundation for the applicant's goal of developing as an independent nurse scientist with a program of research aiming to improve the quality of life and symptom burden of heart failure patients and their family caregivers using a palliative care paradigm through this application's proposed training plan, the resources provided at the University of Alabama at Birmingham, and guided mentorship on the relevant concepts of palliative care, family caregivers, heart failure symptom management, health disparities, nursing science, advanced statistical analyses, and scientific dissemination.