Palliative and End of Life Care in Adolescent and Young Adult Heart Failure

青少年和年轻人心力衰竭的姑息治疗和临终关怀

• 批准号: 10213127
• 负责人: Melissa Kaye Cousino Hood
• 金额: $ 13.02万
• 依托单位: UNIVERSITY OF MICHIGAN AT ANN ARBOR
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-09-01 至 2023-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10213127
• 关键词: Acute; Address; Adolescent and Young Adult; Adult; Advance Care Planning; Awareness; Bioethics; Cardiology; Cessation of life; Child; Childhood; Chronic; Clinical; Code; Communication; Complex; Computers; Congenital Abnormality; Data; Decision Making; Defibrillators; Development; Devices; Disease; Do Not Resuscitate Order; Educational workshop; Enrollment; Ethics; Face; Family; Foundations; Funding; Future; Goals; Guidelines; Health Personnel; Healthcare; Heart; Heart Diseases; Heart Transplantation; Heart failure; Hospitalization; Hospitalized Child; Institute of Medicine (U.S.); Intensive Care Units; Intervention; Intervention Trial; Interview; Knowledge; Legal; Life; Measures; Medical; Mentors; Morbidity - disease rate; Nature; Operative Surgical Procedures; Palliative Care; Parents; Patient-Centered Care; Patients; Pediatric cardiology; Physicians; Population; Prognosis; Provider; Psychosocial Influences; Qualitative Research; Randomized; Research; Research Support; Research Training; Risk; Sampling; Severity of illness; Site; Statistical Data Interpretation; Sudden Death; Testing; Time; Training; Transplant Recipients; Transplantation; Trust; Work; Youth; base; care systems; career; cohort; computerized; congenital heart disorder; cost; eligible participant; end of life; end of life care; end-of-life communication; end-of-life decision making; experience; health related quality of life; hospice environment; improved; intervention cost; meetings; mortality; multi-site trial; palliative; pediatric heart failure; post-transplant; preference; prognostic; randomized controlled design; recruit; research study; symposium; trial design; ventricular assist device; young adult

PROJECT SUMMARY For the growing population of adolescents and young adults (AYAs; 12-24 years) with pediatric heart disease, survival comes at a cost due to increased risk of morbidity and mortality. Approximately 14,000 children experience heart-failure related hospitalizations annually. Among this group, 7% die during their hospitalization – a mortality rate nearly 20 times greater than hat seen in hospitalized children without heart failure and more than double that in adult heart failure. The Institute of Medicine recently highlighted a critical need to better understand and improve medical decision making involvement of AYAs afflicted with serious illnesses across their disease trajectory and as they approach end of life. Yet, research on the end of life and palliative care needs of the growing AYA heart failure population is very limited, despite alarmingly high rates of invasive and costly interventions at the end of life for this group. The current proposal seeks to address gaps in research and practice through three specific aims via two separate studies: Aim 1) To ascertain the end of life care needs and preferences of pediatric heart failure patients and parents via qualitative descriptive research. Quantitative measures of disease severity, health-related quality of life, and trust in physician will be used to further describe the sample. Aim 2) To describe provider communication of prognosis, hope, and advance care planning (e.g., Do Not Resuscitate, Hospice) topics through audio-recorded conversations with AYA cardiology patients and/or their families. A priori hypotheses will not be tested for Aims 1 and 2 given their qualitative nature. Themes will be determined for future hypothesis-driven research. Aim 3) To develop and pilot a provider-directed end of life care communication intervention. It is hypothesized that intervention participation will lead to increased provider use of rapport and partnership building statements and greater physician communication of prognosis, hope, and advance care planning topics. In addition to these three research aims, the K23 proposal includes a robust four-year research training plan. With the support of an interdisciplinary team of expert mentors and advisors, Study PI will gain experiences in qualitative research, pediatric palliative care and bioethics, and randomized intervention trial design and statistical analysis. Training goals will be accomplished through didactic coursework; mentored studies and frequent interactions with mentors and advisors; and seminars, meetings, conferences and workshops. This K23-supported research training and foundational data will enable Study PI to obtain long-term career goals, which include the development and implementation of an R01-funded multi-site, end of life communication-focused computerized intervention trial for pediatric cardiology providers.

项目总结 对于日益增长的患有儿童心脏病的青少年和青壮年(12-24岁)， 由于发病率和死亡率的增加，生存是有代价的。大约14,000名儿童 每年都要经历与心力衰竭相关的住院治疗。在这一群体中，7%的人在住院期间死亡 -死亡率几乎是住院儿童的20倍，没有心力衰竭和更多 在成人心力衰竭患者中是这个数字的两倍多。医学研究所最近强调，迫切需要更好地 了解和改善患有严重疾病的AYAS的医疗决策参与 他们的疾病轨迹，以及当他们接近生命尽头时。然而，关于生命终结和姑息治疗的研究 不断增长的阿亚心力衰竭人口的需求非常有限，尽管侵袭性和 对于这一群体来说，在生命末期进行昂贵的干预。目前的提案试图解决研究中的空白 并通过两项独立的研究通过三个具体目标进行实践：目标1)确定生命护理的终点 通过定性描述性研究了解儿童心力衰竭患者及其父母的需求和偏好。 将使用疾病严重性、与健康相关的生活质量和对医生的信任的量化测量来 进一步描述样品。目的2)描述提供者对预后、希望和高级护理的沟通 通过与Aya心脏科的录音对话来规划(例如，不要复苏、临终关怀)主题 患者和/或他们的家人。先验假设将不会针对目标1和目标2进行测试，因为它们是定性的 大自然。主题将为未来以假设为导向的研究确定。目标3)开发和试行 提供者指导的临终关怀沟通干预。据推测，干预参与 将导致更多的提供者使用融洽的关系和建立伙伴关系的声明，以及更好的医生 沟通预后、希望和高级护理计划主题。除了这三个研究目标外， K23的提案包括一个强有力的四年研究培训计划。在一个跨学科的支持下 专家导师和顾问团队，研究PI将获得定性研究的经验，儿科姑息 护理和生命伦理学，以及随机干预试验设计和统计分析。培训目标将是 通过讲授课程完成；有指导的学习和与导师和 顾问；以及研讨会、会议、会议和讲习班。这项由K23支持的研究培训和 基础数据将使研究PI能够获得长期的职业目标，包括发展和 实施R01资助的多站点、以生命末期通信为重点的计算机化干预试验 为儿科心脏病提供者准备的。