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

项目摘要 对于不断增长的患有小儿心脏病的青少年和年轻人（AYAs; 12-24岁）， 由于发病率和死亡率的风险增加，生存是有代价的。约14，000名儿童 每年经历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。 - 死亡率几乎是没有心力衰竭的住院儿童的20倍， 比成人心力衰竭患者的两倍还要多。医学研究所最近强调，迫切需要更好地 了解并改善患有严重疾病的AYA的医疗决策参与， 他们的疾病轨迹和他们接近生命的尽头。然而，关于临终关怀和姑息治疗的研究 不断增长的AYA心力衰竭人群的需求非常有限，尽管侵入性和 在这一群体生命结束时进行昂贵的干预。目前的建议旨在填补研究方面的空白 通过两项独立的研究，通过三个具体目标进行实践：目标1）确定生命结束护理 通过定性描述性研究了解儿童心力衰竭患者和父母的需求和偏好。 疾病严重程度、健康相关生活质量和对医生的信任的定量测量将用于 进一步描述样本。目的2）描述提供者对预后、希望和预先护理的沟通 规划（例如，不要复苏，临终关怀）主题，通过与AYA心脏病学的录音对话 患者和/或其家属。鉴于目标1和目标2的定性假设， 自然主题将被确定为未来的假设驱动的研究。目标3）发展和试行 提供者指导的临终关怀沟通干预。据推测，干预参与 将导致提供者更多地使用融洽关系和伙伴关系建设声明， 预后、希望和提前护理计划主题的沟通。除了这三个研究目标之外， K23计划包括一个强有力的四年研究培训计划。在跨学科的支持下， 由专家导师和顾问组成的团队，研究PI将获得定性研究、儿科姑息治疗和 护理和生物伦理学，随机干预试验设计和统计分析。培训目标将是 通过教学课程完成;指导研究和与导师的频繁互动， 顾问;以及研讨会、会议、大会和讲习班。K23支持的研究培训和 基础数据将使研究PI获得长期职业目标，其中包括发展和 实施R 01资助的多中心、以临终沟通为重点的计算机化干预试验 儿科心脏病医生的

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.