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

项目摘要 超过650万成年人受到心力衰竭的影响，而且这一数字正在迅速增长，特别是在各种和 健康差距非常普遍的南方农村人口。虽然患者可以受益于 建议在诊断晚期心力衰竭时整合姑息治疗，大多数患者转诊的时间较晚。 如果真的有的话。心力衰竭姑息治疗的主要目标是积极的症状管理，哪个家庭 照顾者在这方面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 对于护理者来说，掌握有关疾病和症状轨迹的信息对于制定个性化的 制定治疗计划，并建立与患者目标一致的护理。心力衰竭患者报告的人数多达19人 共生症状；然而，表征共生症状模式的研究有限 轨迹。此外，关于这些症状与患者之间的关系的信息很少。 和照顾者的个人和作为二人组的生活质量。这项拟议的研究将解决这一问题 研究差距，并提供关于高级心力衰竭症状模式轨迹的量化数据，包括 护理者支持的影响。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 启用：CHF-PC(教育、培养、建议，生命结束前，为患者提供全面的心脏护理和 照顾者；5R01NR013665；Bakitas Pi)多点随机对照试验。启用CHF PC功能为 为服务不足的南方和农村人口提供远程保健和姑息治疗干预。拟议的研究将 使用潜变量建模检查此母研究(3个时间点)的纵向症状数据 针对独特具体目标的分析：1)识别和分离不同的症状模式轨迹 居住在南方腹地的患有晚期心力衰竭的老年人姑息护理干预参与者和2) 量化社会人口统计特征(如种族、性别、乡村和二元人)之间的联系 健康)、临床/生理特征和症状模式轨迹。这项拟议的研究是 与国家护理研究所促进个性化健康策略的研究目标一致 并帮助管理和缓解各种姑息和临终环境中的症状和痛苦 人口。此NRSA提案将作为申请者开发AS的目标的重要基础 一位独立的护士科学家，拥有旨在改善生活质量和症状的研究计划 心力衰竭患者和他们的家庭照顾者的负担 申请的培训计划，阿拉巴马大学伯明翰分校提供的资源，以及 关于姑息治疗、家庭照顾者、心力衰竭症状的相关概念的指导指导 管理、健康差距、护理科学、高级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.