All Cause Mortality 1-30 Years After Interventions for Congenital Heart Diseases

先天性心脏病干预后 1-30 年的全因死亡率

• 批准号: 9096979
• 负责人: Lazaros K. Kochilas
• 金额: $ 24.3万
• 依托单位: EMORY UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-04-01 至 2018-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9096979
• 关键词: Address; Adult; Age; Arrhythmia; Birth History; Blood Circulation; Cardiac; Cardiopulmonary Bypass; Caring; Categories; Catheters; Cause of Death; Cessation of life; Child; Childhood; Chronic; Clinical; Data; Data Set; Databases; Death Certificates; Defibrillators; Development; Diagnosis; Diagnostic Procedure; Event; Exposure to; Family; First Name; General Population; Geographic state; Health; Healthcare; Heart failure; Hypoxemia; Implant; Individual; Infant; Intervention; Knowledge; Last Name; Lesion; Link; Longitudinal Studies; Medical; Morbidity - disease rate; Operative Surgical Procedures; Other Genetics; Outcome; Pacemakers; Patients; Pattern; Perioperative; Physiological; Population; Pregnancy; Premature Mortality; Procedures; Recording of previous events; Registries; Reporting; Resources; Risk; Risk Factors; Surgical Management; Survivors; Syndrome; Vital Status; Woman; cohort; comparative effectiveness; congenital heart disorder; experience; follow-up; indexing; meetings; mortality; palliation; palliative; patient population; population based; prevent; repaired; sex

DESCRIPTION (provided by applicant): Since the 1940s, the introduction of surgical and other interventional and diagnostic techniques for congenital heart diseases (CHD) opened the way for the survival of patients beyond the boundaries imposed by the condition with which they were born. With these advancements, about 85-90% of infants with CHD are expected to reach adulthood and the number of adults with repaired or palliated CHD is believed to exceed 1,000,000 in the US. These CHD survivors are expected to experience different morbidity and causes of death than the general population. Since the dramatic change in the fate of patients with CHD is a relatively recent event, data about the longer term altered history of patients surviving interventions for CHD remains largely unknown. We aim to study mortality patterns and causes of death in a large cohort of patients after interventions for CHD. We will use data from the Pediatric Cardiac Care Consortium (PCCC), the longest standing registry of outcomes for pediatric cardiac interventions in the world and the only one including data from cardiac, trans- catheter and electrophysiologic procedures from 48 centers in 27 U.S. states. The project leverages this unique clinical dataset and the National Death Index (NDI) which is the most accurate registry of death in the U.S. and includes causes of death as listed on the death certificate. We will link the two datasets with available direct identifiers to determine vital staus and immediate and underlying cause of death in individuals with repaired or palliated CHD. The combined dataset will be used to compare the 1-30 year overall and cause- specific mortality for individuals with repaired or palliated CHD to the general U.S. population and between specific types of the most common CHD. In addition, we will calculate immediate and underlying causes of death for patients with CHDs and compare them with data from the general population. Completion of this study will provide valuable data about survival after repair or palliation of CHD. Long-term data is needed to guide the management of this rapidly growing population and educate patients and their families about their expected outcomes and comparative effectiveness data of different management strategies. In addition, the project may identify fatal conditions at risk for development in survivors with CHD and it may help to understand and prevent or minimize pregnancy associated-risks in women with CHD. This knowledge can be used to modify contributing risk factors or increase targeted surveillance for specific categories of patients.

描述（由申请人提供）：自 20 世纪 40 年代以来，针对先天性心脏病 (CHD) 的外科手术和其他介入及诊断技术的引入，为患者的生存开辟了道路，超越了出生条件所规定的界限。随着这些进步，大约 85-90% 的先天性心脏病婴儿预计能够成年，并且美国患有修复或缓解的先天性心脏病的成年人数量据信将超过 1,000,000 人。这些先心病幸存者预计将经历与普通人群不同的发病率和死因。由于冠心病患者命运的巨大变化是一个相对较新的事件，因此有关冠心病干预后幸存患者的长期历史改变的数据仍然很大程度上未知。我们的目标是研究大量患者在接受冠心病干预后的死亡率模式和死因。我们将使用儿科心脏护理联盟 (PCCC) 的数据，该联盟是世界上历史最悠久的儿科心脏干预结果登记处，也是唯一一个包含来自美国 27 个州 48 个中心的心脏、经导管和电生理程序数据的登记处。该项目利用了这一独特的临床数据集和国家死亡指数 (NDI)，这是美国最准确的死亡登记处，包括死亡证明上列出的死亡原因。我们将把两个数据集与可用的直接标识符联系起来，以确定患有修复或姑息性先心病的个体的生命状态以及直接和根本的死亡原因。合并的数据集将用于比较已修复或姑息性先心病患者与美国普通人群以及最常见先心病特定类型之间的 1-30 年总体死亡率和特定原因死亡率。此外，我们将计算先心病患者的直接和根本死亡原因，并将其与一般人群的数据进行比较。这项研究的完成将为先心病修复或姑息治疗后的生存提供有价值的数据。需要长期数据来指导这一快速增长的人群的管理，并教育患者及其家人了解不同管理策略的预期结果和比较有效性数据。此外，该项目可能会识别先心病幸存者面临致命疾病的风险，并可能有助于了解和预防或最大程度地减少先心病妇女与妊娠相关的风险。这些知识可用于修改危险因素或增加对特定类别患者的有针对性的监测。