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

• 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
• 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

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.

项目概要 成人先天性心脏病 (ACHD) 患者患有终生慢性疾病，有可能导致 对生活质量产生不利影响并导致早期死亡。他们经历了不同程度的身体和 认知障碍并面临复杂的社交和情感挑战，部分原因是认知障碍 与他们的疾病相关的心理社会发展。他们报告与健康相关的生活质量较差并感到不适 能够有效应对疾病的影响并做出艰难的医疗保健决策。姑息治疗 护理为提高 ACHD 患者的生活质量和改善医疗护理提供了绝佳的机会， 但基于证据的姑息治疗尚未纳入 ACHD 护理中。韧性，利用个人 面对压力时维持身体和情感健康的资源是姑息治疗的一个有希望的目标 护理干预，因为它可以提高自我效能并提高生活质量。本次活动的长远目标 该奖项旨在促进斯坦纳博士发展成为一名独立的医师科学家，致力于改善 对 ACHD 患者进行姑息治疗。斯坦纳博士将评估与健康相关的复原力 心理社会结果，并适应和测试针对 ACHD 患者的成功的复原力干预。这 “促进压力管理复原力”（PRISM）干预措施已证明可以有效改善 提高青少年和年轻人癌症患者的生活质量并减轻心理困扰 已成功适用于患有其他慢性病的患者及其父母。在本提案的目标 1 中， 斯坦纳博士将进行一项前瞻性队列研究，以确定复原力和特定能力之间的关联。 以患者为中心的心理社会结果，即患者的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的知识和技能 关于复原力的观点。她将评估 PRISM 的可接受性并确定改进其的方法 针对该患者群体的内容。目标 1 和 2 将通知目标 3，她将在其中进行随机试点 旨在评估 PRISM 干预措施的可行性和初步效果的试验，以增强 患有 ACHD 的患者。为了支持她的职业发展，斯坦纳博士提出了一个综合课程 以下学习目标：1）心理功能和行为干预研究，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) 拨款和手稿准备。拟议的项目活动将在强大的智力范围内进行 华盛顿大学提供的环境是一所坚定致力于 研究者的学术研究事业的发展，她将拥有该研究所的大量资源 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 ACHD 患者来说，确定最大限度提高生活质量并纳入姑息治疗的方法至关重要 并最终将鼓励医疗保健参与并加强患者护理。