Long-term Outcomes after Interventions for Congenital Heart Disease

先天性心脏病干预后的长期结果

• 批准号: 10219333
• 负责人: Lazaros K. Kochilas
• 金额: $ 102.96万
• 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 2023-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10219333
• 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

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.

项目摘要/摘要 先天性心脏病(CHD)影响着近1%在美国出生的儿童，其中许多 他们需要心脏手术以避免死亡或严重的发病率。外科治疗的新进展 心脏病的发生导致了越来越多的冠心病幸存者，现在全世界有200多万冠心病患者。 美国，其中一半以上是成年人。虽然现在存活到成年对冠心病来说是极好的 对于许多类型的冠心病患者，死亡率只是简单地转移了几十年，现在发生在成年。 此外，随着年龄的增长，这些患者不断地暴露在额外的心血管和非 心血管疾病与普通人群一样，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，没有什么是 关于教育程度、就业和社会关系的已知在这一增长中 人口。了解长期结果对于确定干预机会和 在资源利用率较高的人群中规划卫生保健服务。 我们的项目旨在通过将CHD患者的长期结果与 儿科心脏护理联盟(PCCC)，一家总部设在美国的CHDS干预大型注册机构，与 国家死亡指数(NDI)。这种联系使我们能够组成一个队列，描述长期的 手术后冠心病患者的死亡率。由于PCCC登记处的规模和范围是无与伦比的，因此 方法提供了美国最强大的数据源，用于检查患者的预后轨迹 手术治疗CHD，现已成年。然而，除了死亡率之外，患者的另一个重要结果 冠心病在各种干预措施下存活下来的是终末期心力衰竭或肺功能衰竭 高血压导致需要器官移植。为了解决这一限制，我们补充了以下内容 与器官采购和移植网络(OPTN)研究登记册相联系的数据集 获取关于同一队列中的移植和器官移植名单的信息。在下一阶段 在我们的项目中，死亡和移植数据将更新到2021年，以评估与 在这个老龄化的队列中存活和移植。此外，作为我们项目继续的一部分，我们将 调查患者及其兄弟姐妹，以确定疾病对长期医疗的影响， 冠心病幸存者的神经认知和心理社会结局与他们的兄弟姐妹和一般人群的比较 并确定可能与这些结果有关的相关预后因素 这项研究的完成将为先天性术后的预期结果提供一个现实和全面的视角 心脏手术。这一信息将对冠心病人群的所有相关利益相关者有用，并将 促进患者及其家属、护理提供者、卫生保健管理人员和公共卫生的参与 在这一弱势群体中，警察有能力改善结果。