Mechanical Circulatory Support in Patient-Caregiver Dyads: A Longitudinal Study

描述(申请人提供)：心力衰竭(HF)是美国发展最快的心血管疾病，而心室辅助装置(VAD)治疗正在成为晚期HF的主要治疗选择。由于VAD患者的门诊护理对这种高风险治疗的成功至关重要，目前的指南要求VAD患者指定一名非正式的照顾者。同时，文献中广泛的共识认为照看与健康和生活质量(QOL)受损有关，这表明VAD照顾者也是高危人群。总而言之，强制患者-护理者二人组在VAD治疗中发挥着关键作用，但由于不知道VAD治疗对二人组的影响，提供者识别和支持面临较大不良结果风险的患者和护理者的能力受到限制。因此，这项拟议研究的总体目标是提供关于VAD患者-护理者二元组的急需的量化数据，描述并确定患者、护理者和二元组结局的决定因素随时间的变化。将进行一项前瞻性纵向队列研究，作为NINR赞助的关于VAD患者的R01的辅助研究，以收集参加父母研究的患者的相关照顾者的数据。使用二元方法，多水平和多变量纵向建模将被用于：1)确定个人水平(患者和照顾者)的不良患者临床事件风险和生活质量的决定因素；2)量化个人水平的不良照顾者压力决定因素与身体健康之间的关系；3)描述VAD患者-照顾者双方的心理症状和生活质量随时间的变化。这项创新研究将是VAD患者-护理者二元组的第一个纵向定量研究，因此将为推进临床管理和研究提供基础数据，并更好地支持最优的患者、护理者和二元组结果。此外，作为国家研究服务奖提案的一部分，这项研究有助于将申请者发展成为一名独立和多产的护士科学家的长期目标，并具有可持续的研究计划，开发与临床相关的可操作知识，以解决管理和支持VAD患者及其照顾者这一快速增长的高危人群中的关键概念和问题。为了确保申请者拥有实现这一目标所需的知识和专业知识，本建议利用了一支模范跨学科团队的综合专业知识，该团队由心衰、VAD和照护二人组的专家临床医生和研究人员组成，他们与申请者合作制定了一项全面的培训计划，其中包括对研究伦理行为、多种分析方法和学术传播方面的基本内容和应用经验的掌握。因此，这项提案的基本成果与NINR的目标非常一致，因为它将支持NINR的发展，以培养下一代护士科学家，加强创新，同时提供信息，促进健康，改善生活质量，并减少日益增长和脆弱的患者和护理人员的症状。

DESCRIPTION (provided by applicant): Heart failure (HF) is the fastest growing cardiovascular disorder in the U.S., and ventricular assist device (VAD) therapy is emerging as a main therapeutic option for advanced HF. Because outpatient care of a VAD patient is critical to the success of this high-risk therapy, current guidelines require that VAD patients designate an informal caregiver. At the same time, broad consensus in the literature that associates caregiving with compromised health and quality of life (QOL) suggests that VAD caregivers are also an at-risk population. Together, mandated patient-caregiver dyads play a critical role in VAD therapy, but without knowledge of the impact of VAD therapy on the dyad, providers are limited in their ability to identify and support patients and caregivers at greater risk for poor outcomes. As such, the overall goal of this proposed research is to provide much-needed quantitative data on VAD patient-caregiver dyads, describing changes in and identifying determinants of patient, caregiver, and dyadic outcomes over time. A prospective longitudinal cohort study, ancillary to a NINR-sponsored R01 on VAD patients, will be conducted to collect data on associated caregivers of patients enrolled in the parent study. Using a dyadic approach, multilevel and multivariate longitudinal modeling will be used to: 1) identify individual-level (patient and caregiver) determinants of worse patient clinical event risk and QOL, 2) quantify the relationship between individual-level determinants of worse caregiver strain and physical health, and 3) describe change in psychological symptoms and QOL in VAD patient-caregiver dyads over time. This innovative research will be the first longitudinal, quantitative study of patient-caregiver dyads in VAD, and will therefore provide foundational data to advance clinical management and research, and better support optimal patient, caregiver, and dyadic outcomes. Additionally, as part of a National Research Service Award proposal, this study contributes to the long-term goal of developing the applicant into an independent and productive nurse-scientist with a sustainable program of research that develops clinically relevant, actionable knowledge to address critical concepts and issues in the management and support of this rapidly growing, at-risk population of VAD patients and their caregivers. In order to ensure that the applicant has the necessary knowledge and expertise to attain this goal, this proposal draws on the combined expertise of an exemplary interdisciplinary team, consisting of expert clinicians and researchers in HF, VAD, and caregiving dyads, who have, in collaboration with the applicant, developed a comprehensive training plan that includes essential mastery of content and applied experience in the ethical conduct of research, multiple analytic approaches, and scholarly dissemination. The fundamental outcomes of this proposal are therefore well-aligned with the goals of the NINR, in that it will support the development the next generation of nurse scientists and enhance innovation, while concurrently providing information to promote health, improve QOL, and reduce symptoms in a growing and vulnerable population of patients and caregivers.