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

项目总结/摘要 自我管理反映了患者管理医疗状况、情绪和社会角色的能力。由于 严重慢性疾病导致的能力下降（或波动），以及由此产生的复杂的医疗问题。 在护理方面，等待胸部移植的患者依靠非专业护理人员来加强自我管理。实际上 照顾者是如此重要，没有确定的照顾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存活相关。作为移植病人的健康 此外，照顾者补充病人的自我照顾任务，家庭和家庭责任，并提供 增加情感支持。不幸的是，照顾者遭受不幸的后遗症，由于高的预- 移植护理者的负担，表现为增加的压力，痛苦，抑郁和焦虑， 社会功能有效地管理照顾者的压力和痛苦是一个关键的未满足的需求， 在这一人群中缺乏行之有效的策略。由于照顾者对确保最佳自我至关重要， 管理和移植结果，本研究的目的是改善护理人员的压力和负担， 从而改善护理人员的健康。健康指导是压力管理的有效策略， 其他人口。在这里，我们提出了一个30分钟的电话健康指导干预的随机试验 每周一次，持续12周（与常规护理相比），在60名胸移植候选人的护理人员中进行， 马约诊所的候诊名单患者报告的结果工具测量压力，照顾者负担， 将在基线和入组后12-16周测量弹性、情绪、情感和生活质量。的 主要结果将比较研究结束时的感知压力评分，根据基线值进行调整。我们还将 使用开放式和Likert量表问题定性评估可接受性和可行性。二次 结果将比较研究结束时的照顾者负担、弹性、影响、生活质量和情绪 测量，调整基线评分。该应用程序的长期目标是优化后， 通过有效的移植前干预措施来改善移植结果。我们假设健康指导 可接受的和可行的胸部移植照顾者，并将改善照顾者的感知压力。我们 进一步假设，未来的研究将证明，移植前干预，以改善照顾者， 压力和幸福感将与移植受者的结果改善相关。这项工作将提供 一个潜在的途径，以改善照顾者的压力，在移植前的时期。这项研究的结果将是 用于完善干预措施，并计划进行更大规模的多中心试验，以验证研究结果， 探讨这种照顾者干预对移植患者自我管理和移植的影响 成果。该提案支持NIH改善心肺移植结果的使命 疾病患者，同时支持初级研究者过渡到研究独立。

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.