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

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1/2百万新病例。在确诊的第一年内，五分之一的人会死亡， 80%在确诊后8年内死亡。然而，只有不到10%的患者获得了基本医疗护理以外的支持性或姑息治疗服务。该提案旨在填补我们对患者-护理者二元组中心力衰竭生活经历的知识空白，方法是探索这些二元组的独特需求，这些二元组具有1年或2年的预测生存期，在终末期心力衰竭轨迹和不同人群的两个护理提供系统中具有各种医学不稳定和医学稳定模式。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患者-护理人员配对的姑息治疗需求的关键变化，包括医疗不稳定和医疗稳定模式、护理提供系统和人口统计学的变化（年龄、性别、种族/种族）和2）开发一种算法，指定个性化姑息治疗干预的类型和时间，以满足患者的需求-基于终末期心力衰竭轨迹的变化，提供护理人员二人组。将招募100名在两个医疗保健提供系统（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）的内科/家庭实践中心接受随访的患者-护理人员配对（总样本n=200 [患者和护理人员]）。将入组50例预测生存期为1年的患者及其护理人员和50例预测生存期为2年的患者及其护理人员。将每月对二人组进行一次访谈，持续长达24个月（或直至患者死亡），以探索这些二人组在经历终末期心力衰竭轨迹时的姑息治疗需求。在这个项目的结论，我们将有thik，丰富的描述终末期心力衰竭的经验，包括二分之一的姑息治疗的需要，哪些需要得到满足，哪些还没有得到解决，哪些类型的姑息治疗干预措施提供和接受，干预措施的时机，以及在新的干预措施，以满足这些需求方面有待探索的领域。我们将通过建立一种可用于转化为临床实践的算法，为心力衰竭患者-护理人员二人组的针对性姑息治疗干预措施提供指导，从而为循证实践做出重大贡献。该算法应该能够根据预测的生存率、1年与2年以及患者、护理人员和二分体整体的其他特征来指导干预。该算法将准备好在支持性临床试验中与姑息治疗干预一起进行沿着测试，该试验具有更大和更多样化的心力衰竭患者-护理者配对人群。

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.