Does a Pre-transplant Health Coaching Intervention for Informal Caregivers of Adult Heart or Lung Transplant Candidates Improve Caregiver-Reported Outcomes?

项目摘要/摘要 自我管理反映了患者管理医疗条件、情绪和社会角色的能力。到期 继发于严重慢性病的能力减弱(或波动)，以及由此产生的复杂的医学 护理方面，等待胸部移植的患者依靠非专业护理员加强自我管理。事实上， 护理者是如此重要，以至于没有身份护理者的患者将不会被列入移植名单。护理者 特征和行为与移植患者和移植物的存活率有关。作为移植患者的健康 更糟糕的是，照顾者补充了患者的自我护理任务，家庭和家庭责任，并提供 增加情感上的支持。不幸的是，照顾者遭受不良后遗症的结果是高Pre- 移植照顾者的负担，表现为压力增加、痛苦、抑郁和焦虑，以及更贫穷 社交功能。有效地管理照顾者的压力和痛苦是一项关键的未得到满足的需求，因为 在这群人中，缺乏经过验证的策略。因为照顾者是确保最佳自我保护的关键 管理和移植结果，这项研究的目的是改善照顾者的压力和负担， 从而提高照顾者的幸福感。健康指导是一种有效的压力管理策略 其他种群。在这里，我们提出了一项30分钟电话健康指导干预的随机试验 每周一次，持续12周(与通常的护理相比)，在60名胸部移植患者的照顾者中 梅奥诊所的等候名单。患者报告的结果工具，测量压力，照顾者负担， 复原力、情绪、情感和生活质量将在基线和注册后12-16周进行测量。这个 主要结果将比较研究结束时感觉到的压力得分，并根据基准值进行调整。我们还将 使用开放式问题和Likert量表问题来定性评估可接受性和可行性。次要的 研究结果将比较研究结束后照顾者的负担、弹性、情感、生活质量和情绪 测量，根据基线分数进行调整。这个应用程序的长期目标是优化后继 通过有效的移植前干预措施实现移植效果。我们假设健康指导将会是 胸腔移植护理人员可以接受和可行，并将改善护理人员感受到的压力。我们 进一步假设，未来的研究将证明，移植前的干预措施可以改善照顾者 压力和幸福感将与移植受者结果的改善相关。这项工作将提供 这是改善移植前照顾者压力的潜在途径。这项研究的结果将是 用于改进干预措施并计划进行更大规模的多中心试验，以验证研究结果和 探讨护理者干预对移植患者自我管理和移植效果的影响 结果。这项提案支持美国国立卫生研究院改善心肺移植结果的任务。 同时支持初级研究人员向研究独立过渡。

PROJECT SUMMARY/ABSTRACT Self-management reflects a patient’s capacity to manage medical conditions, emotions, and social roles. Due to diminished (or fluctuating) capacity secondary to severe chronic illness, and its resultant complex medical care, patients awaiting thoracic transplantation rely on lay caregivers to enhance self-management. In fact, the caregiver is so important that a patient without an identified caregiver will not be listed for transplant. Caregiver traits and behaviors are associated with both transplant patient and graft survival. As transplant patients’ health worsens, caregivers supplement patients’ self-care tasks, household and family responsibilities, and provide increased emotional support. Unfortunately, caregivers suffer untoward sequelae as the result of high pre- transplant caregiver burden, manifesting as increased stress, distress, depression, and anxiety, and poorer social functioning. Effectively managing caregiver stress and distress represents a critical unmet need, as proven strategies are lacking in this population. As caregivers are essential for ensuring optimal self- management and transplant outcomes, the objective of this study is to improve caregiver stress and burden, thereby improving caregiver well-being. Health coaching is an effective strategy for stress management in other populations. Here, we propose a randomized trial of a 30-minute telephonic health-coaching intervention once weekly for 12 weeks (compared to usual care) in 60 caregivers for thoracic transplant candidates on the waiting list at Mayo Clinic. Patient-reported outcome instruments measuring stress, caregiver burden, resilience, mood, affect, and quality of life will be measured at baseline and 12-16 weeks after enrollment. The primary outcome will compare end-of-study perceived stress score, adjusted for baseline values. We will also qualitatively assess acceptability and feasibility using open-ended and Likert-scale questions. Secondary outcomes will compare end-of-study caregiver burden, resilience, affect, quality of life, and mood measurements, adjusted for baseline scores. The long-term goal of this application is to optimize post- transplant outcomes through effective pre-transplant interventions. We hypothesize that health coaching will be acceptable and feasible to thoracic transplant caregivers and will improve caregivers’ perceived stress. We further hypothesize that future studies will demonstrate that pre-transplant interventions to improve caregiver stress and well-being will be associated with improved outcomes in transplant recipients. This work will provide a potential avenue to improve caregiver stress in the pre-transplant period. The results of this study will be used to refine the intervention and plan for a larger, multi-center trial designed to validate the findings and explore the effects of this caregiver intervention on transplant patients’ self-management and transplant outcomes. This proposal supports the NIH mission for improving transplant outcomes in heart and lung disease patients while supporting a junior investigator in her transition to research independence.