Ethics and policy challenges in pediatric and adult congenital heart disease

儿科和成人先天性心脏病的伦理和政策挑战

• 批准号: 8257418
• 负责人: James N Kirkpatrick
• 金额: $ 1.5万
• 依托单位: UNIVERSITY OF PENNSYLVANIA
• 依托单位国家: 美国
• 财政年份: 2012
• 资助国家: 美国
• 起止时间: 2012-03-15 至 2013-02-28
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8257418
• 关键词: Address; Adult; Advance Care Planning; Advance Directives; Attention; Basic Science; Bioethics; Bioethics Consultants; Cardiology; Cardiovascular system; Caring; Childhood; Clinic; Clinical; Clinical Sciences; Conscious; Consensus Development; Coupled; Development; Diagnosis; Disease Management; Environment; Ethical Analysis; Ethical Issues; Ethicists; Ethics; Ethics in Publishing; Family; Foundations; Funding; Future; Guidelines; Health; Health Professional; Home environment; Industry; Institution; Interview; Journals; Knowledge; Learning; Mechanics; Medicine; Nurses; Palliative Care; Paper; Participant; Patients; Pediatric Hospitals; Pennsylvania; Philadelphia; Physicians; Policies; Policy Developments; Population; Positioning Attribute; Psychologist; Public Health; Publishing; Quality of life; Religion and Spirituality; Research; Research Methodology; Scholarship; Social Workers; Specialist; Travel; Treatment Cost; Universities; care systems; clinical care; congenital heart disorder; continuing medical education; cost; document outlines; health administration; lectures; multidisciplinary; profession allied to medicine; programs; psychosocial; research and development; symposium; therapy development; ventricular assist device

DESCRIPTION (provided by applicant): This document outlines a proposal for a 1 1/2 day symposium in March, 2012, administered by the University of Pennsylvania Department of Continuing Medical Education and hosted by the Division of Cardiology of the Children's Hospital of Philadelphia, the Cardiovascular Medicine Division of the University of Pennsylvania and the Penn Center for Bioethics on the topic of Ethics and Policy Challenges in Pediatric and Adult Congenital Heart Disease. This topic has received little attention, yet the growing number of patients surviving with congenital heart disease, coupled with the increasing number, complexity and cost of treatments for these patients makes this topic timely. The general aims of this conference include the following: 1. Convene a multidisciplinary panel of nationally-known experts in the fields of Pediatric Congenital Heart Disease, Adult Congenital Heart Disease and Bioethics to identify and discuss the most important ethical issues in congenital heart disease. 2. Provide a forum where clinicians, ethicists, chaplains, social workers, public health workers and trainees in each of these fields can discuss current and future developments in the ethics of congenital heart disease management. 3. Enable and encourage participants to address these issues in research endeavors, quality improvement initiatives and policy development and implementation at their home institutions. 4. Generate a conference proceedings document to be published in an ethics journal, and a position paper outlining an agenda for research, quality improvement initiatives and policy development in ethics of congenital heart disease, to be published in cardiology journal. This symposium will employ a combination of traditional and unique formats to achieve the objectives, including brief lectures, case presentations with ethical analysis, debates, panel discussions, small group sessions and one-on-one conversational interviews at the end of each day. These formats will emphasize discussion and audience participation, and the final session will involve small groups in which attendees will share specific plans to apply what they have learned at the conference. Facilitation of interdisciplinary discussion and participation of trainees will be primary focuses of the program. We will offer three trainee travel scholarships and reduced tuition rates for clinicians from underserved health clinics. We anticipate that this conference will serve as the foundation for clinical guidelines and policy development, to be facilitated by future conferences on this and other topics in cardiovascular ethics. PUBLIC HEALTH RELEVANCE: The topic of ethics and congenital heart disease increasing in importance with the growing number of congenital heart disease patients surviving to adulthood, thanks to dramatic advances in diagnosis and treatment. But these advances have created their own dilemmas. Clinical and basic science research and development often advance faster than ethical discourse, and there is a need to analyze the ethics of research methods and the trajectory of new therapy development.

描述（由申请人提供）：本文件概述了宾夕法尼亚大学继续医学教育系的1 1/2天研讨会的提案，并由费城儿童医院的心脏病学系主持，并在宾夕法尼亚州的心血管医学分部主持了宾夕法尼亚州和宾夕法尼亚大学的挑战性，宾夕法尼亚州的挑战性挑战界，和成人先天性心脏病。这个话题很少受到关注，但是越来越多的患有先天性心脏病的患者，加上这些患者的越来越多，复杂性和治疗成本的越来越多。这次会议的总体目标包括：1。召集小儿先天性心脏病，成人先天性心脏病和生物伦理学领域的全国知名专家的多学科小组，以识别和讨论先天性心脏病中最重要的道德问题。 2。提供一个论坛，在该论坛上，这些领域的临床医生，伦理学家，牧师，社会工作者，公共卫生工作者和受训者可以讨论先天性心脏病管理伦理学的当前和未来发展。 3。使参与者能够在其内政机构中的研究努力，质量改进计划以及政策制定以及实施中解决这些问题。 4.生成旨在发表在《道德杂志》上的会议诉讼文件，以及一份概述了先天性心脏病伦理学的研究，质量改进计划和政策发展议程的职位论文，将在心脏病学杂志上发表。该研讨会将采用传统和独特的格式的结合来实现目标，包括简短的讲座，案例演讲，道德分析，辩论，小组讨论，小组会议和每天结束时进行一对一的对话访谈。这些格式将强调讨论和观众的参与，最后会议将涉及小组，在该团体中，与会者将分享特定的计划以应用他们在会议上学到的知识。跨学科讨论和学员参与的便利将是该计划的主要重点。我们将为服务不足的健康诊所的临床医生提供三项学员旅行奖学金，并降低学费。我们预计，这次会议将成为临床准则和政策制定的基础，并将在未来关于心血管伦理学和其他主题的会议促进。 公共卫生相关性：伦理和先天性心脏病的话题随着诊断和治疗方面的巨大进步而越来越重要的先天性心脏病患者的重要性越来越重要。但是这些进步造成了自己的困境。临床和基础科学研究和发展通常比道德话语更快，并且有必要分析研究方法的伦理和新疗法发展的轨迹。