Understanding Caregiving in Heart Failure and Impact on Outcomes

项目摘要 改善心力衰竭结局的策略主要集中在处方药物、饮食和治疗方面。 修改和锻炼，以改善血液动力学和缓解充血。尽管如此，患者 心力衰竭患者仍然受到反复住院的困扰，这会降低他们的生活质量， 社会的沉重负担。虽然社会支持网络是病人管理心脏能力的组成部分， 失败和维持临床稳定性，目前的方法来照顾心力衰竭没有充分整合 支持系统。社会支持网络的一个关键组成部分是病人的照顾者，其中许多人 是帮助病人满足日常需求的家人和朋友。在我们设计 有效的护理提供系统，以最佳方式吸引护理人员，我们需要更好地了解护理 以及护理对患者结果的影响。该提案旨在调查 心力衰竭患者的护理人员的经验，并了解这些经验如何影响 患者和护理人员的健康和结果。 在目标1中，将使用罗切斯特的资源招募心力衰竭患者及其护理人员 流行病学项目，一个针对居住在东南部的患者的基于人口的医疗记录链接系统 明尼苏达使用混合方法的方法，我们将前瞻性地研究经验， 评估护理的积极和消极方面如何与患者和护理人员的质量相关 生命和患者住院风险。考虑到配偶在照顾患有精神分裂症的病人方面所起的重要作用， 慢性疾病，如心力衰竭，在目标2中，我们将评估配偶健康与 患者结局。使用我们现有的新诊断心力衰竭患者流行病学队列， 2000年至2012年，我们将以电子方式将患者的医疗记录数据与其配偶的综合信息联系起来。 纵向健康史这个丰富的数据集将使我们能够测试假设，更糟糕的配偶健康是 与诊断后更差的患者结局相关， 患者死亡。 我们的研究团队是独特的定位，做这项工作，因为我们在社区为基础的专业知识， 流行病学研究、心力衰竭和心脏病。现实世界的人口统计数据和照顾者的角色 心力衰竭患者以及住院经历对患者和护理者结局的影响从未被 在流行病学社区环境中进行检查。识别、表征和纵向跟踪的能力 鉴于罗切斯特流行病学项目的丰富资源，病人-护理人员二人组是唯一可能的。 这些发现将为患者的社会支持环境提供重要的见解，并使我们能够 开发新的模式，使护理人员参与心力衰竭患者的纵向护理。

PROJECT SUMMARY Strategies to improve outcomes in heart failure have largely focused on prescribing medications, dietary modifications and exercise to improve hemodynamics and relieve congestion. Despite these efforts, patients with heart failure are still plagued by repeated hospitalizations that can degrade their quality of life and place a heavy burden on society. While social support networks are integral to a patient’s ability to manage their heart failure and maintain clinical stability, current approaches to the care of heart failure do not adequately integrate support systems. One key component of the social support network is the patient’s caregivers, many of whom are family and friends that help patients meet the daily demands of their condition. Before we can design effective care delivery systems that optimally engage caregivers, we need a better understanding of the care that they are providing and the impact that care has on patient outcomes. This proposal aims to investigate the experiences of caregivers of patients with heart failure and understand how those experiences impact the health and outcomes of both patients and caregivers. In Aim 1, patients with heart failure and their caregivers will be recruited using the resources of the Rochester Epidemiology Project, a population-based medical records linkage system for patients living in Southeastern Minnesota. Using a mixed-methods approach, we will prospectively examine caregiving experiences and evaluate how positive and negative aspects of caregiving are associated with patient and caregiver quality of life and patient risk of hospitalization. Given the prominent role that spouses play in the care of patients with chronic conditions such as heart failure, in Aim 2 we will evaluate the association between spousal health and patient outcomes. Using our existing epidemiologic cohort of patients with newly diagnosed heart failure from 2000-2012, we will electronically link patient medical record data with their spouse’s comprehensive longitudinal health history. This rich dataset will enable us to test the hypotheses that worse spousal health is associated with worse patient outcomes after diagnosis and that spousal healthcare utilization increases after patient death. Our research team is uniquely positioned to do this work given our expertise in community-based epidemiologic studies, heart failure, and caregiving. The real-world demographics and roles of caregivers of patients with HF and the impact of caregiving experiences on patient and caregiver outcomes has never been examined in an epidemiologic community setting. The ability to identify, characterize and longitudinally follow patient-caregiver dyads is uniquely possible given the rich resources of the Rochester Epidemiology Project. These findings will provide important insights into the patient’s social support environment and enable us to develop new models that engage caregivers in the longitudinal care of patients with heart failure.