Assessing and Promoting Resilience in Adults with Adult Congenital Heart Disease

评估和促进患有成人先天性心脏病的成年人的复原力

基本信息

批准号：
10311551
负责人：
Jill Marie Steiner
金额：
$ 18.39万
依托单位：
UNIVERSITY OF WASHINGTON
依托单位国家：
美国
项目类别：
财政年份：
2020
资助国家：
美国
起止时间：
2020-12-03 至 2025-11-30
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10311551
关键词：
Address Adolescent Adolescent and Young Adult Adult Advance Care Planning Affect Age Anxiety Award Behavior Therapy Behavioral Research Cardiology Caring Cessation of life Child Childhood Chronic Disease Clinical Trials Design Cognitive Competence Complex Development Disease Disease Progression Educational Curriculum Emotional Enrollment Environment Face Family Future Goals Grant Health Healthcare Heart failure Hospitalization Illness impact Impairment Individual Institution Intervention Interview Kidney Diseases Knowledge Learning Life Link Liver diseases Lung diseases Malignant Neoplasms Manuscripts Measures Medical Mental Depression Methods Minority Operative Surgical Procedures Outcome Outcome Measure Palliative Care Parents Participant Patient Care Patient Outcomes Assessments Patient-Focused Outcomes Patients Physicians Population Populations at Risk Preparation Process Prospective cohort study Qualitative Methods Qualitative Research Quality of life Randomized Randomized Clinical Trials Reporting Research Research Methodology Research Personnel Research Training Resources Risk Scientist Self Efficacy Severity of illness Statistical Data Interpretation Stress Structure Symptoms Testing Thinking Universities Washington Well in self Work anxiety symptoms base career career development clinical care clinically significant cognitive disability comorbidity congenital heart disorder disability end of life evidence base experience feasibility testing health related quality of life improved improved outcome meetings mortality novel patient oriented patient population physically handicapped psychologic psychological distress psychological symptom psychosocial psychosocial development psychosocial wellbeing randomized trial recruit resilience resilience scale skills social social skills stress management tool treatment as usual young adult

项目摘要

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.

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引起早期死亡率。他们经历了不同水平的身体和认知障碍并面临复杂的社会和情感挑战，部分原因是与他们的疾病有关的社会心理发展。他们报告与健康相关的生活质量不佳，感到不良配备有效应对疾病的影响并导致困难的医疗保健决策。姑息治疗护理提供了增强生活质量并改善ACHD患者的医疗护理的绝佳机会但是，基于证据的姑息治疗尚未纳入ACHD护理中。弹性，利用个人面对压力，以维持身体和情感福祉的资源是姑息治疗的承诺目标护理干预是因为它促进自我效能并改善生活质量。这个长期目标奖项是将Steiner博士的发展促进一名独立的物理科学家，旨在改善 ACHD患者的姑息治疗。 Steiner博士将评估与健康有关的弹性为ACHD患者的心理社会结局，适应并测试成功的弹性干预措施。这 “促进压力管理中的韧性”（PRISM）干预已表明在改善生活质量和减轻青少年和癌症年轻人的心理困扰我们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， Steiner博士将进行一项前瞻性队列研究，以确定韧性与特定之间的关联以患者为中心的心理社会成果，即生活质量和心理困扰 Achd。在AIM 2中，她将使用半结构化定性访谈来了解患者对和有关弹性的观点。她将评估棱镜的可接受性，并确定改进其的方法为此患者人群的内容。目标1和2将告知AIM 3，她将进行随机进行飞行员试验以评估PRISM干预的可行性和初步效率，以增强弹性患有ACHD的患者。为了支持她的职业发展，Steiner博士提出了与以下学习目标：1）心理功能和行为干预的研究，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强大的知识分子内进行华盛顿大学提供的环境，该机构对开发研究人员的学术研究职业，她将获得大量资源心脏病学和坎比亚姑息治疗卓越中心。在这个快速增长的人群中在患有ACHD的患者中，确定最大化生活质量并纳入姑息治疗的方法至关重要并最终鼓励医疗保健参与并增强患者护理。