Palliative Care Needs of Community-Dwelling Patients with Advanced Heart Failure and Physical Frailty

项目摘要 美国有600万心力衰竭患者，预计患病率将增加40 今后十年尽管治疗的进步允许HF的医学管理，但患者通常 经历支离破碎的护理，严重的身体症状，心理后遗症，存在的痛苦， 不断增加的生存需求、复杂的寿命终止决策以及财务问题。尽管 压倒性的证据表明，早期整合姑息治疗有效地解决了这些复杂的需求 在HF患者中，改善了生活质量，减少了住院治疗，不到600万患者的10%。 HF患者接受姑息治疗。如果他们这样做，它往往是后期纳入他们的疾病轨迹。 姑息治疗应根据患者的感知需求整合到传统的HF护理中， 姑息治疗的八个领域，包括身体、心理、社会、精神、文化、道德/法律的， 生命的尽头，以及护理协调的需要。然而，很少有研究调查未满足的姑息治疗需求 HF患者，特别是身体虚弱的患者。因为大约有一半的病人 HF是身体虚弱，有一个关键需要了解未满足的姑息治疗需要的身体虚弱 晚期HF患者。此外，我们需要了解如何更高的未满足姑息治疗的需求， 身体虚弱可能会相互作用，导致生活质量下降， 住院/死亡率。然而，没有研究调查过这种现象，这在我们的研究中造成了空白。 了解身体虚弱和未满足的姑息治疗需求对关键HF结局的潜在影响。 采用前瞻性设计，本研究旨在调查未满足姑息治疗的关联 需求和身体虚弱与种族多样性、近期住院患者的关键HF结局， 社区居民中晚期HF患者。这将通过以下具体措施来实现 目的：目的1：检测未满足的姑息治疗需求与关键HF结局（健康相关质量）的相关性 6个月全因住院/死亡）。目标2：测试身体虚弱与钥匙的关联 HF结局（健康相关生活质量和6个月全因住院/死亡）。探索性目的： 测试身体虚弱和未满足的姑息治疗需求对关键心力衰竭结局的相互作用。 填补这一科学空白将为制定未来的干预措施提供基础证据， 身体虚弱的心力衰竭患者的姑息治疗需求。本研究的概念模型 创新地与姑息治疗和国家护理研究所的最佳实践指南保持一致 研究的目标是进行研究，开发最有效的方法来筛选，评估和监测 患有严重晚期疾病的个人及其家人的已满足和未满足的姑息治疗需求。

Project Summary There are 6 million people with heart failure in the United States with an expected 40% increase in prevalence in the next decade. Although advances in therapies allow for medical management of HF, patients often experience fragmented care, severe physical symptoms, psychological sequelae, existential distress, increased caregiving needs, complex end of life decision making, and financial concerns. Despite overwhelming evidence that early integration of palliative care effectively addresses these complex needs among HF patients, improves quality of life, and decreases hospitalizations, less than 10% of the six million patients with HF receive palliative care. If they do, it is often incorporated late in their disease trajectory. Palliative care should be integrated into traditional HF care based on patients’ perceived needs in any of the eight domains of palliative care which include physical, psychological, social, spiritual, cultural, ethical/legal, end of life, and care coordination needs. However, few studies have examined the unmet palliative care needs of patients with HF, particularly those who are physically frail. Because approximately half of all patients with HF are physically frail, there is a critical need to understand the unmet palliative care needs of physically frail patients with advanced HF. Further, we need to understand how higher unmet palliative care needs and physical frailty may interact to contribute to worse quality of life and increased odds of hospitalizations/mortality. However, no studies have investigated this phenomenon, creating a gap in our understanding of the potential impact of physical frailty and unmet palliative care needs on key HF outcomes. Using a prospective design, this study aims to investigate the associations of unmet palliative care needs and physical frailty with key HF outcomes among racially diverse, recently hospitalized, community-dwelling people with advanced HF. This will be accomplished through the following specific aims: Aim 1: Test the associations of unmet palliative care needs with key HF outcomes (health-related quality of life and 6-month all-cause hospitalization/mortality). Aim 2: Test the associations of physical frailty with key HF outcomes (health-related quality of life and 6-month all-cause hospitalization/mortality). Exploratory Aim: Test the interaction of physical frailty and unmet palliative care needs on key heart failure outcomes. Filling this gap in the science will provide foundational evidence to develop future interventions addressing the palliative care needs of physically frail patients with heart failure. The conceptual model of this study innovatively aligns with best-practice guidelines for palliative care and the National Institute for Nursing Research’s goal to conduct research which develops the most effective ways to screen, assess, and monitor the met and unmet palliative care needs of individuals with serious advanced illness and their families.