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: 10536612
• 负责人: Jill Marie Steiner
• 金额: $ 18.44万
• 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/10536612
• 关键词: Address; Adolescent; Adolescent and young adult cancer patients; 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; Eligibility Determination; Emotional; Enrollment; Environment; Face; Family; Future; Goals; Grant; Health; Healthcare; Heart failure; Hospitalization; Illness impact; Impairment; Individual; Institution; Intervention; Interview; Kidney Diseases; Knowledge; Learning; Link; Liver diseases; Lung diseases; Manuscripts; Measures; Medical; Mental Depression; Methods; Minority Participation; 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; 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; career; career development; clinical care; clinically significant; cognitive disability; comorbidity; congenital heart disorder; coping; depressive symptoms; 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; promote resilience; psychologic; psychological distress; psychological symptom; psychosocial; psychosocial development; psychosocial wellbeing; randomized trial; randomized, clinical trials; 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.

项目总结 成人先天性心脏病(ACHD)患者患有终生慢性疾病，有可能 对生活质量产生不利影响，并导致过早死亡。他们经历了不同程度的身体和 认知障碍并面临复杂的社会和情感挑战，部分原因是 心理社会发展与他们的疾病有关。他们报告与健康相关的生活质量较差，并感到不适- 有能力有效应对疾病的影响，并做出艰难的医疗决策。姑息疗法 护理为提高ACHD患者的生活质量和改善医疗护理提供了很好的机会， 但循证姑息治疗尚未纳入ACHD护理。韧性，驾驭个人 在压力面前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，因为它提高了自我效能，改善了生活质量。这样做的长期目标是 该奖项是为了促进斯坦纳博士发展成为一名独立的内科科学家，致力于改善 急性心肌梗死患者的姑息治疗。施泰纳博士将评估弹性，因为它与健康相关 为ACHD患者调整和测试成功的复原力干预的心理社会结果。这个 “在压力管理中促进复原力”(PRISM)干预措施已显示出改善 生活质量和缓解青少年癌症患者和青年的心理痛苦 已经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， 施泰纳博士将进行一项前瞻性的队列研究，以确定弹性和特定疾病之间的联系 以患者为中心的心理社会结局，即生活质量和心理困扰 阿赫德。在目标2中，她将使用半结构化定性访谈来了解患者对 关于复原力的观点。她将评估PRISM的可接受性，并确定改进其 对这些患者群体的满意程度。目标1和目标2将通知目标3，其中她将进行随机试验 评价PRISM干预提高老年人心理弹性的可行性和初步效果 ACHD患者。为了支持她的职业发展，施泰纳博士提出了一项综合课程， 学习目标如下：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，4) 助学金和手稿准备。拟议的项目活动将在健壮的知识分子中进行 华盛顿大学提供的环境，这是一所致力于 发展调查员的学术研究事业，她将拥有丰富的 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，找到最大化生活质量和纳入姑息治疗的方法是至关重要的 并最终将鼓励医疗保健参与并加强患者护理。