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