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: 8670521
• 负责人: Lazaros K. Kochilas
• 金额: $ 65.82万
• 依托单位: UNIVERSITY OF MINNESOTA
• 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/8670521
• 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; 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; public health relevance; 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1940年代以来，先天性心脏病（CHD）引入了外科手术和其他介入和诊断技术，这为患者的生存开辟了道路。随着这些进步，约有85-90％的冠心病婴儿有望成年，并且据信在美国修复或贴身的冠心病的成年人数量将超过1,000,000。预计这些CHD幸存者将经历与普通人群不同的发病率和死亡原因。由于冠心病患者命运的巨大变化是一个相对较新的事件，因此有关冠心病患者的长期变化病史的数据仍然很少知道。我们的目标是研究冠心病干预措施后，大量患者的死亡模式和死亡原因。我们将使用来自儿科心脏护理联盟（PCCC）的数据，这是世界上儿科心脏干预的结局最长的注册表，也是唯一来自美国27个州48个中心的心脏，跨导管和电生理程序的数据。该项目利用了这个独特的临床数据集和国家死亡指数（NDI），该数据集是美国最准确的死亡注册表，其中包括死亡证明书中列出的死亡原因。我们将将两个数据集与可用的直接标识符联系起来，以确定修复或贴染的冠心病患者中的重要和立即和潜在的死亡原因。合并的数据集将用于比较对普通冠心病的人群以及最常见的CHD的特定类型之间的修复或贴平的人的整体1 - 30年和特定原因的死亡率。此外，我们将计算CHD患者的立即和潜在的死亡原因，并将其与普通人群的数据进行比较。这项研究的完成将提供有关CHD修复或抑制后生存的有价值数据。需要长期数据来指导这种迅速增长的人口的管理，并向患者及其家人了解他们的预期结果和不同管理策略的比较有效性数据。此外，该项目可能会确定冠心病幸存者有发育风险的致命状况，并且可能有助于理解和预防或最大程度地减少冠心病女性的妊娠风险。这些知识可用于修改促进风险因素或增加针对特定类别患者的目标监视。