Palliative care algorithms for HF dyads: 1-year versus 2-year predicted survival

心衰二元组的姑息治疗算法：1 年与 2 年预测生存率

• 批准号: 8338911
• 负责人: Judith E Hupcey
• 金额: $ 41.98万
• 依托单位: PENNSYLVANIA STATE UNIVERSITY, THE
• 依托单位国家: 美国
• 财政年份: 2011
• 资助国家: 美国
• 起止时间: 2011-09-26 至 2015-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8338911
• 关键词: Acute; Address; Admission activity; Affect; Age; Algorithms; American; Area; Caregivers; Caring; Cessation of life; Characteristics; Decision Making; Demographic Aging; Diagnosis; Emotional; Enrollment; Evidence based practice; Face; Family Caregiver; Family Practice; Gender; General Population; Grief reaction; Guidelines; Health; Health system; Heart; Heart Diseases; Heart failure; Hospitals; Internal Medicine; Intervention; Interview; Knowledge; Life; Life Experience; Long-Term Care; Longitudinal Studies; Medical; Medical center; Modeling; Palliative Care; Patients; Pattern; Philosophy; Physiological; Population; Population Heterogeneity; Quality of life; Race; Recruitment Activity; Refractory; Risk; Rural; Sampling; Services; Site; Specific qualifier value; Spouse Caregiver; Spouses; Staging; Sudden Death; Supportive care; Symptoms; System; Terminal Disease; Testing; Time; Translations; United States; Variant; Work; advanced disease; base; care delivery; clinical practice; coping; design; experience; health care delivery; hospice environment; inner city; meetings; palliative; racial and ethnic; suburb

DESCRIPTION (provided by applicant): Almost 6 million Americans live with heart failure with 1/2 million new cases diagnosed each year. Within the first year of diagnosis 1 in 5 will die, with 80% dying within 8 years of diagnosis. Yet, less than 10% of patients are offered supportive or palliative care services beyond basic medical care. This proposal aims to fill the gap in our knowledge about the experience of living with heart failure in patient-caregiver dyads by exploring the unique needs of these dyads with 1-year or 2-year predicted survival with various patterns of medical instability and medical stability across the terminal heart failure trajectory and across two care delivery systems with diverse populations. The specific aims are: 1) To identify the critical variations in palliative care needs of patient-caregiver dyads between patients with a 1-year predicted survival and a 2-year predicted survival including variations in patterns of medical instability and medical stability, care delivery systems, and population demographics (age, gender, ethnic/racial) and 2) To develop an algorithm that specifies type and timing of individualized palliative care interventions to meet the needs of patient-caregiver dyads based on variations across the terminal heart failure trajectory. One hundred patient-caregiver dyads (total sample n=200 [patients and caregivers]) who are followed in internal medicine/family practice sites at two healthcare delivery systems: Penn State Hershey Medical Center and Harrisburg Hospital, Pinnacle Health Systems, will be recruited. Fifty patients and their caregivers that have a 1-year predicted survival and 50 patients and their caregivers with a 2-year predicted survival will be enrolled. Dyads will be interviewed monthly for up to 24 months (or until the death of the patient) to explore the palliative care needs of these dyads as they traverse the terminal heart failure trajectory. At the conclusion of this project, we will have thik, rich descriptions of the terminal heart failure experience including the dyad's palliative care needs, which needs were met and which have not been addressed, which types of palliative care interventions were offered and accepted, timing of interventions, and areas to be explored in terms of new interventions to meet these needs. We will make a significant contribution to evidence-based practice by building an algorithm available for translation into clinical practice a a guideline for targeted palliative care interventions for heart failure patient-caregiver dyads. This algorithm should be able to guide interventions based on predicted survival, 1-year versus 2-year and other characteristics of the patient, caregiver, and the dyad as a whole. This algorithm will be ready to be tested along with palliative care intervention in a supportive clinicl trial with a larger and more diverse population of heart failure patient-caregiver dyads.

描述（由申请人提供）：近 600 万美国人患有心力衰竭，每年诊断出 1/20 万新病例。在诊断的第一年内，五分之一的人会死亡，其中 80% 在诊断后 8 年内死亡。然而，只有不到 10% 的患者获得基本医疗护理之外的支持性或姑息治疗服务。该提案旨在通过探索这些二人组的独特需求，探索这些二人组的独特需求，以填补我们对患者-护理人员二人组心力衰竭生活经验的空白，这些二人组具有各种医疗不稳定模式和医疗稳定性，涵盖终末心力衰竭轨迹以及具有不同人群的两个护理服务系统。具体目标是： 1) 确定 1 年预测生存期和 2 年预测生存期患者之间的患者-护理人员二人组的姑息治疗需求的关键差异，包括医疗不稳定和医疗稳定模式、护理服务系统和人口统计数据（年龄、性别、民族/种族）的差异，以及 2) 开发一种算法，指定个性化姑息治疗干预措施的类型和时间，以满足 基于终末心力衰竭轨迹变化的患者-护理人员二元组的需求。将招募 100 名患者-护理人员二人组（总样本 n=200 [患者和护理人员]），他们将在两个医疗保健服务系统的内科/家庭诊所进行跟踪：宾夕法尼亚州立大学好时医疗中心和哈里斯堡医院、Pinnacle Health Systems。将招募 50 名预计有 1 年生存期的患者及其护理人员，以及 50 名预计有 2 年生存期的患者及其护理人员。两人将每月接受一次长达 24 个月（或直至患者死亡）的访谈，以探讨这些两人在经历终末心力衰竭轨迹时的姑息治疗需求。在该项目结束时，我们将对末期心力衰竭经历进行丰富的描述，包括二人的姑息治疗需求，哪些需求已得到满足，哪些需求尚未得到满足，提供和接受了哪些类型的姑息治疗干预措施，干预措施的时间安排，以及为满足这些需求而需要探索的新干预措施的领域。我们将通过构建可转化为临床实践的算法，为心力衰竭患者-护理人员二人组提供有针对性的姑息治疗干预指南，为循证实践做出重大贡献。该算法应该能够根据预测生存率、1 年与 2 年以及患者、护理人员和整个二人组的其他特征来指导干预措施。该算法将准备好与姑息治疗干预一起在支持性临床试验中进行测试，该临床试验涉及更多、更多样化的心力衰竭患者-护理人员二人组。