Assessing and Promoting Resilience in Adults with Adult Congenital Heart Disease

项目摘要 成人先天性心脏病（ACHD）患者患有终身慢性疾病，有可能 不利地影响生活质量并导致过早死亡。他们经历了不同程度的身体和 认知障碍和面临复杂的社会和情感挑战，部分原因是由于受损的 与疾病有关的心理发展。他们报告与健康相关的生活质量差，感觉不舒服- 配备有效应对疾病的影响和导航困难的医疗保健决策。姑息 护理提供了很大的机会，以加强生活质量和改善医疗照顾的病人与ACHD， 但循证姑息治疗尚未纳入ACHD治疗。恢复力，利用个人 在面对压力时维持身体和情绪健康的资源，是姑息治疗的一个有希望的目标。 护理干预，因为它促进自我效能和提高生活质量。长期目标是 该奖项旨在促进施泰纳博士发展成为一名独立的医生科学家，致力于改善 为ACHD患者提供姑息治疗。施泰纳博士将评估弹性，因为它涉及到健康相关的 心理社会结果，适应和测试一个成功的弹性干预与ACHD患者。的 "促进压力管理中的复原力"（PRISM）干预措施已证明在改善 生活质量和减轻青少年和年轻人癌症患者的心理困扰， 已成功地适用于其他慢性病患者及其父母。在本提案的目标1中， 博士施泰纳将进行一项前瞻性队列研究，以确定弹性与特定的 以患者为中心的心理社会结局，即生活质量和心理困扰， ACHD。在目标2中，她将使用半结构化定性访谈来了解患者对 关于韧性的观点。她将评估PRISM的可接受性，并确定如何完善其 这一患者群体的内容。目标1和目标2将通知目标3，在目标3中，她将进行一项试验性随机 试验，以评估PRISM干预措施的可行性和初步疗效，以提高 ACHD患者为了支持她的职业发展，施泰纳博士提出了一个综合课程， 以下学习目标：1）研究心理功能和行为干预，2） 先进的定性研究方法，3）临床试验设计，实施和统计分析，以及4） 赠款和手稿准备。拟议的项目活动将在健全的知识体系内进行， 华盛顿大学提供的环境，一个坚定的承诺， 发展研究人员的学术研究事业，她将有大量的资源， 心脏病科和坎比亚姑息治疗卓越中心。在这个快速增长的人口中 对于患有ACHD的患者，确定最大限度提高生活质量和纳入姑息治疗的方法至关重要 最终将鼓励医疗保健参与并加强患者护理。

PROJECT SUMMARY Patients with adult congenital heart disease (ACHD) live with a life-long chronic illness that has the potential to adversely affect quality of life and cause early mortality. They experience varied levels of physical and cognitive disability and face complex social and emotional challenges, in part because of impaired psychosocial development related to their disease. They report poor health-related quality of life and feel ill- equipped to effectively cope with the impact of illness and navigate difficult health care decisions. Palliative care offers great opportunity to strengthen quality of life and improve the medical care of patients with ACHD, but evidence-based palliative care is not yet incorporated in ACHD care. Resilience, harnessing personal resources to sustain physical and emotional well-being in the face of stress, is a promising target for palliative care intervention because it promotes self-efficacy and improves quality of life. The long-term goal of this award is to promote Dr. Steiner’s development into an independent physician scientist working to improve palliative care for patients with ACHD. Dr. Steiner will evaluate resilience as it relates to health-related psychosocial outcomes and adapt and test a successful resilience intervention for patients with ACHD. The “Promoting Resilience in Stress Management” (PRISM) intervention has demonstrated efficacy in improving quality of life and alleviating psychological distress among adolescents and young adults with cancer and has been successfully adapted for patients with other chronic illnesses and their parents. In Aim 1 of this proposal, Dr. Steiner will conduct a prospective cohort study to determine the association between resilience and specific patient-centered psychosocial outcomes, namely quality of life and psychological distress, in patients with ACHD. In Aim 2, she will use semi-structured qualitative interviews to understand patients’ knowledge of and perspectives regarding resilience. She will assess the acceptability of PRISM and identify ways to refine its content for this patient population. Aims 1 and 2 will inform Aim 3, in which she will conduct a pilot randomized trial to evaluate the feasibility and preliminary efficacy of the PRISM intervention to enhance resilience in patients with ACHD. To support her career development, Dr. Steiner proposes an integrated curriculum with the following learning objectives: 1) research in psychological function and behavioral interventions, 2) advanced qualitative research methods, 3) clinical trial design, implementation, and statistical analysis, and 4) grant and manuscript preparation. The proposed project activities will take place within the robust intellectual environment offered by the University of Washington, an institution with a strong commitment to the development of investigators’ academic research careers, and she will have available the vast resources of the Division of Cardiology and the Cambia Center for Palliative Care Excellence. In this rapidly-growing population of patients with ACHD, identifying ways to maximize quality of life and incorporate palliative care is essential and will ultimately encourage healthcare engagement and enhance patient care.