Understanding Caregiving in Heart Failure and Impact on Outcomes

项目总结 改善心力衰竭预后的策略在很大程度上集中在处方药物、饮食 修改和锻炼以改善血流动力学和缓解充血。尽管做出了这些努力，患者们 患有心力衰竭的人仍然受到反复住院的困扰，这可能会降低他们的生活质量，并使 社会负担沉重。虽然社会支持网络对患者管理心脏的能力是不可或缺的 心力衰竭和维持临床稳定性，目前的心力衰竭护理方法没有充分整合 支持系统。社会支持网络的一个关键组成部分是患者的照顾者，其中许多人 是帮助患者满足日常需求的家人和朋友。在我们可以设计之前 有效的护理提供系统，以最佳方式吸引照顾者，我们需要更好地了解护理 他们正在提供的服务以及护理对患者结局的影响。这项提案旨在调查 心力衰竭患者照顾者的经历并了解这些经历如何影响 患者和照顾者的健康和结果。 在目标1中，心力衰竭患者和他们的照顾者将使用罗切斯特的资源进行招募 流行病学项目--为东南部地区患者建立的基于人群的病历链接系统 明尼苏达州。使用混合方法，我们将前瞻性地检查护理经验和 评估护理的积极和消极方面与患者和照顾者质量之间的关系 住院的生命和病人风险。鉴于配偶在照顾患有糖尿病的患者方面发挥的突出作用 如心力衰竭等慢性疾病，在目标2中，我们将评估配偶健康和 病人的结果。利用我们现有的新诊断心力衰竭患者的流行病学队列 2000-2012年，我们将把病人的病历数据与其配偶的综合病历数据进行电子连接 纵向健康史。这一丰富的数据集将使我们能够测试以下假设：配偶健康状况越差 与诊断后较差的患者结局以及配偶医疗保健利用率在诊断后增加有关 病人死亡。 考虑到我们在基于社区的研究方面的专业知识，我们的研究团队处于独特的地位来完成这项工作 流行病学研究、心力衰竭和护理。现实世界中的人口统计和照顾者的角色 心力衰竭患者和护理经历对患者和照顾者结局的影响从来没有 在流行病学社区环境中进行检查。识别、描述和纵向跟踪的能力 鉴于罗切斯特流行病学项目的丰富资源，患者-照顾者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，让照顾者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.