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

描述(由申请者提供)：近600万美国人患有心力衰竭，每年有150万新诊断病例。在确诊的第一年内，每5人中就有1人死亡， 80%的患者在确诊后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。这项建议旨在通过探索患者-护理者二人组的独特需求来填补我们对患者-护理者二人组中心力衰竭生活经验的了解空白，这些二元组的预测生存时间为1年或2年，在终末期心力衰竭轨迹和两个不同人群的护理提供系统中具有不同的医疗不稳定和医疗稳定性模式。具体目标是：1)确定患者-照顾者二元组的姑息治疗需求的关键变化，包括医疗不稳定和医疗稳定性、护理提供系统和人口统计(年龄、性别、民族/种族)的模式的变化；2)开发一种算法，该算法指定个性化姑息治疗干预的类型和时间，以满足基于终末期心力衰竭轨迹变化的患者-照顾者二元组的需求。将招募100名患者-护理者二人组(总样本n=200[患者和护理者])，他们在宾夕法尼亚州立好时医疗中心和顶峰医疗系统的哈里斯堡医院这两个医疗保健提供系统的内科/家庭实践地点接受跟踪。预计存活1年的50名患者及其照顾者和预测生存2年的50名患者及其照顾者将入选。Diads将在长达24个月的时间里每月接受采访(或直到患者死亡)，以探索这些DUADS在终末期心力衰竭轨迹中的姑息治疗需求。在本项目结束时，我们将对终末期心力衰竭的经历有丰富的描述，包括二元患者的姑息护理需求，哪些需求得到满足，哪些需求尚未得到解决，哪些类型的姑息护理干预被提供和接受，干预的时机，以及根据满足这些需求的新干预措施有待探索的领域。我们将通过建立一种可用于转化为临床实践的算法来为循证实践做出重大贡献，该算法是心力衰竭患者-照顾者双方有针对性的姑息干预的指南。这个算法应该能够根据患者、照顾者和作为一个整体的二元体的预测生存期、1年和2年以及其他特征来指导干预。该算法将准备好与姑息治疗干预一起在一项支持性临床试验中进行测试，试验对象为更大、更多样化的心力衰竭患者-照顾者二元组。

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.