Long-term Outcomes after Interventions for Congenital Heart Disease

先天性心脏病干预后的长期结果

基本信息

批准号：
10455498
负责人：
Lazaros K. Kochilas
金额：
$ 82.87万
依托单位：
EMORY UNIVERSITY
依托单位国家：
美国
项目类别：
财政年份：
2014
资助国家：
美国
起止时间：
2014-04-01 至 2024-07-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10455498
关键词：
Address Administrator Adult Affect Age Aging Arrhythmia Award Cardiac Cardiac Surgery procedures Cardiovascular system Caring Cause of Death Cessation of life Characteristics Child Childhood Childhood Cancer Survivor Study Complication Data Data Files Data Set Data Sources Development Disease Employment Exposure to Face Family General Population Health Health Services Healthcare Heart failure Injury Intervention Lesion Life Link Longevity Malignant Neoplasms Medical Modeling Monitor Morbidity - disease rate Neurocognitive Operative Surgical Procedures Organ Organ Donor Organ Transplantation Outcome Pathology Patient Care Patient-Focused Outcomes Patients Pediatric Surgical Procedures Persons Phase Population Positioning Attribute Premature Mortality Probability Procedures Prognostic Factor Public Health Pulmonary Hypertension Quality of life Registries Research Residual state Resources Risk Sampling Siblings Surgical Management Surveys Survivors Time Transplantation United States Update Vulnerable Populations base care providers cohort congenital heart disorder evidence base follow-up health care service planning improved improved outcome indexing mortality mortality risk organ procurement transplantation network patient engagement patient oriented population survey post-transplant premature psychosocial response risk minimization risk stratification sex social relationships socioeconomics

项目摘要

Project Summary/Abstract Congenital heart diseases (CHD) affect nearly 1% of children born in the United States (US), with many of them requiring heart surgery to avoid mortality or significant morbidity. Advances in the surgical management of CHDs have led to a growing population of CHD survivors, with now over 2 million persons with CHD in the United States, more than half of whom are adults. While survival to adulthood is now excellent for CHD patients, for many CHD types the mortality has simply shifted a few decades and now occurs in adulthood. Moreover, with age, these patients are continuously exposed to additional cardiovascular and non- cardiovascular morbidities along with the general population, and risk for these morbidities is likely higher as they are expected to create synergistic injury leading to additional premature mortality. Importantly, little is known concerning educational attainment, employment, and social relationships among this growing population. Understanding long-term outcomes is important for identifying opportunities for intervention and planning for health care services in this population with high resource utilization. Our project aims to fill important gaps related to the long-term outcomes for patients with CHD by linking the Pediatric Cardiac Care Consortium (PCCC), a large US-based registry for interventions of CHDs, with the National Death Index (NDI). This linkage allowed us to constitute a cohort that describes the long-term mortality of patients with an operated CHD. Since the PCCC registry is unparalleled in its size and scope, this approach provides the most powerful data source in the US to examine the trajectory of outcomes for patients operated for CHD now reaching adult age. However, besides mortality another important outcome for patients surviving various interventions for CHD is the development of end stage cardiac failure or pulmonary hypertension resulting in the need for organ transplantation. To address this limitation, we supplemented this dataset with linkage with the Organ Procurement and Transplantation Network (OPTN) research registry to obtain information regarding listing for transplant and organ transplants in the same cohort. In the next phase of our project, both death and transplant data will be updated through 2021 to assess characteristics related to survival and transplant within this aging cohort. In addition, as part of the continuation of our project we will survey patients and their siblings to determine the effects of the disease on the long-term medical, neurocognitive, and psychosocial outcomes for survivors of CHD compared to their siblings and the general population and to identify relevant prognostic factors that may be associated with those outcomes Completion of this study will provide a realistic and comprehensive view of expected outcomes after congenital heart surgery. This information will be useful to all relevant stake holders for the population of CHD and will promote engagement of patients and their families, care providers, health care administrators and public health officers to improve outcomes in this vulnerable population.

项目概要/摘要先天性心脏病 (CHD) 影响着美国 (US) 出生的近 1% 的儿童，其中许多儿童患有先天性心脏病 (CHD)。他们需要进行心脏手术以避免死亡或严重发病。外科治疗的进展冠心病的发病率导致冠心病幸存者人数不断增加，目前美国有超过 200 万人患有冠心病。美国，其中一半以上是成年人。虽然现在对于冠心病来说存活到成年的情况非常好对于许多类型的先心病患者来说，死亡率只是发生了几十年的变化，现在发生在成年期。此外，随着年龄的增长，这些患者不断暴露于额外的心血管和非心血管疾病与一般人群一样，并且这些疾病的风险可能更高，因为预计它们会造成协同伤害，导致更多的过早死亡。重要的是，很少有人们对这个不断成长的人的教育程度、就业和社会关系的了解人口。了解长期结果对于确定干预和干预机会非常重要规划针对这一资源利用率高的人群的医疗保健服务。我们的项目旨在通过将以下因素联系起来，填补与先心病患者长期结局相关的重要空白：儿科心脏护理联盟 (PCCC) 是一家总部位于美国的大型先心病干预登记机构，全国死亡指数（NDI）。这种联系使我们能够构建一个描述长期的队列接受手术的 CHD 患者的死亡率。由于 PCCC 注册机构的规模和范围是无与伦比的，因此该方法提供了美国最强大的数据源来检查患者的结果轨迹因冠心病接受手术，现已成年。然而，除了死亡率之外，患者的另一个重要结果在对冠心病采取各种干预措施后幸存下来，最终会导致终末期心力衰竭或肺衰竭高血压导致需要器官移植。为了解决这个限制，我们补充了这个与器官采购和移植网络 (OPTN) 研究登记处关联的数据集获取有关同一队列中的移植和器官移植列表的信息。在下一阶段在我们的项目中，死亡和移植数据将在 2021 年更新，以评估与这个老龄化队列中的生存和移植。此外，作为我们项目延续的一部分，我们将调查患者及其兄弟姐妹，以确定该疾病对长期医疗的影响，与兄弟姐妹和一般人相比，先心病幸存者的神经认知和心理社会结果人群并确定可能与这些结果相关的相关预后因素完成本研究将为先天性心脏病术后的预期结果提供现实而全面的看法心脏手术。该信息将对 CHD 人群的所有相关利益相关者有用，并将促进患者及其家人、护理提供者、卫生保健管理人员和公共卫生部门的参与官员改善这一弱势群体的成果。

项目成果

期刊论文数量（29）

专著数量（0）

科研奖励数量（0）

会议论文数量（0）

专利数量（0）

Trends in mortality risk of patients with congenital heart disease during the COVID-19 pandemic.

COVID-19 大流行期间先天性心脏病患者的死亡风险趋势。

DOI：
发表时间：
2024-02
期刊：
影响因子：
4.8
作者：
Yang, Yanxu;Kuo, Kristina;Claxton, J'Neka S;Knight, Jessica H;Huang, Yijian;Oster, Matthew E;Kochilas, Lazaros K
通讯作者：
Kochilas, Lazaros K

Long-term Outcomes of Tetralogy of Fallot: A Study From the Pediatric Cardiac Care Consortium.

法洛四联症的长期结果：儿科心脏护理联盟的一项研究。

DOI：
发表时间：
2019
期刊：
影响因子：
24
作者：
Smith, Clayton A;McCracken, Courtney;Thomas, Amanda S;Spector, Logan G;St Louis, James D;Oster, Matthew E;Moller, James H;Kochilas, Lazaros
通讯作者：
Kochilas, Lazaros

Long-Term Survival of Patients With Coarctation Repaired During Infancy (from the Pediatric Cardiac Care Consortium).

婴儿期修复缩窄患者的长期生存率（来自儿科心脏护理联盟）。

DOI：
发表时间：
2019
期刊：
影响因子：
0
作者：
Oster, Matthew E;McCracken, Courtney;Kiener, Alexander;Aylward, Brandon;Cory, Melinda;Hunting, John;Kochilas, Lazaros K
通讯作者：
Kochilas, Lazaros K

Postoperative and long-term outcomes in children with Trisomy 21 and single ventricle palliation.

21 三体症和单心室姑息治疗儿童的术后和长期结果。

DOI：
发表时间：
2019-09
期刊：
影响因子：
0.3
作者：
Peterson, Jennifer K;Setty, Shaun P;Knight, Jessica H;Thomas, Amanda S;Moller, James H;Kochilas, Lazaros K
通讯作者：
Kochilas, Lazaros K

Long-term Outcomes After Surgical Intervention for Congenital Supravalvar Aortic Stenosis in Children.

儿童先天性瓣上主动脉瓣狭窄手术干预后的长期结果。

DOI：
发表时间：
2024-05
期刊：
影响因子：
0
作者：
Zinyandu, Tawanda;Knight, Jessica H;Thomas, Amanda S;Claxton, J'Neka;Montero, Alejandro;Shaw, Fawwaz R;Kochilas, Lazaros K
通讯作者：
Kochilas, Lazaros K