Developmental Progression of Youth with Critical Congenital Heart Defects

患有严重先天性心脏缺陷的青少年的发育进展

基本信息

批准号：
10611955
负责人：
Kathryn Vannatta
金额：
$ 58.11万
依托单位：
RESEARCH INST NATIONWIDE CHILDREN'S HOSP
依托单位国家：
美国
项目类别：
财政年份：
2020
资助国家：
美国
起止时间：
2020-04-01 至 2025-03-31
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10611955
关键词：
Academic achievement Adolescence Adult Affect Affective Age Attention Behavioral Buffers Child Child Rearing Childhood Chronically Ill Common Ventricle Congenital Heart Defects Critical Congenital Heart Defects Cross-Sectional Studies Cyanosis Deterioration Development Developmental Process Diagnosis Emotional Evaluation Executive Dysfunction Family Friendships Gender Goals Home visitation Human Impairment Individual Intervention Knowledge Life Link Longevity Measures Mediating Medical Methods Mission Morbidity - disease rate Nature Neurocognitive Neurodevelopmental Deficit Neurologic Occupational Operative Surgical Procedures Outcome Parents Pathology Patient Self-Report Performance Perioperative complication Personal Satisfaction Play Population Preschool Child Public Health Quality of life Reporting Research Resources Risk Role Schools Social Adjustment Social Behavior Social Functioning Social Problems Socialization Specificity Structure Survivors Symptoms Tetralogy of Fallot Time United States United States National Institutes of Health Victimization Vulnerable Populations Withdrawal Work Youth burden of illness cognitive skill cohort coping design disability effective intervention elementary school emotional functioning executive function experience fifth grade fourth grade improved informant junior high school middle childhood mortality novel peer post-traumatic stress promote resilience protective factors psychosocial psychosocial development school environment social social neuroscience social skills social stressor stressor teacher theories

项目摘要

Over 40,000 children are born with congenital heart defects (CHD) each year in the United States. Improvements in survival have dramatically reduced early mortality, but there are significant gaps in what we know about the psychosocial development of survivors and the mechanisms of risk that account for key social, academic, and emotional outcomes. Most research has focused on the neurodevelopmental and behavioral deficits of very young children with CHD, and there is growing evidence that difficulties in emotional functioning emerge during adolescence. By comparison, we know relatively little about the nature and timing of deficits in other domains impacted by neurodevelopmental risk, such as social competence, during middle childhood and adolescence. Consequently, there is a critical need for longitudinal research that uses rigorous methods to evaluate changes in social, academic, and emotional functioning of CHD survivors across development to inform the timing and targets of new interventions. Our long-term goal is to reduce psychosocial morbidity and improve quality of life for survivors of CHD across the lifespan. The objective of this proposal is to conduct a longitudinal evaluation of social, academic, and emotional functioning in critical CHD survivors across the transition from elementary to middle school. Using a rigorous, multi-method, multi-informant design, we will assess the peer, teacher and self-report of social behavior, acceptance, and friendships in the 4th and 5th grade classrooms of 180 children with critical CHD. Neurocognitive, academic, emotional, and family function will be assessed 1:1 during home visits with CHD survivors and demographically matched comparison classmates (CC). Assessments of developmental progress and protective factors in the family and school environment will be repeated after two years, following the transition to middle school. We will examine factors that explain variability in outcomes amongst CHD survivors as well as differences between CHD survivors and comparison classmates. This will capture risk associated with CHD-specific as well as general developmental processes. Our premise is that poor academic performance and negative peer experiences (e.g., isolation, victimization, rejection, few friendships) contribute to the emergence of internalizing problems in CHD, but this risk will be mitigated by resources (e.g., facilitative parenting and socialization of coping, teacher and parent support) that could be targeted by novel interventions. This work is guided by the following aims. AIM 1: Compare changes in social, academic, and emotional functioning for children with critical CHD and CC across the transition from elementary to middle school, as well as examine predictive associations across these domains for CHD vs CC. AIM 2: Identify individual and environmental resources that account for impairment or buffer deterioration in academic, social, and emotional functioning over time for CHD survivors vs.CC. AIM 3: Identify CHD-specific medical risks (CHD type, treatment, perioperative complications) and environmental resources that explain variability amongst CHD survivors in social, academic, and emotional functioning over time.

在美国，每年有40,000多名儿童出生于先天性心脏缺陷（CHD）。生存的改善大大降低了早期死亡率，但是我们的差距很大了解幸存者的社会心理发展以及占关键社会的风险机制，学术和情感成果。大多数研究都集中在神经发育和行为上非常年幼的冠心病儿童的缺陷，越来越多的证据表明情绪功能困难在青春期出现。相比之下，我们对缺陷的性质和时间相对较少了解其他受神经发育风险（例如社会能力）在童年和童年时期和青春期。因此，纵向研究的迫切需要，该研究使用严格的方法来评估整个发展中冠心病幸存者的社会，学术和情感功能的变化告知新干预措施的时间和目标。我们的长期目标是减少社会心理发病率和改善整个生命周期的CHD幸存者的生活质量。该提议的目的是进行关键冠心病幸存者的社会，学术和情感功能的纵向评估从小学到中学的过渡。使用严格的多种方法，多信息设计，我们将评估四年级和五年级的社会行为，接受和友谊的同伴，教师和自我报告 180名冠心病儿童的教室。神经认知，学术，情感和家庭功能将是在与冠心病幸存者的家庭探访期间评估1：1 （CC）。评估家庭和学校环境中的保护因素和保护因素过渡到中学后两年后重复。我们将研究解释的因素冠心病幸存者的结局变异性以及冠心病幸存者和比较之间的差异同学。这将捕获与冠心病特异性以及一般发育过程相关的风险。我们的前提是，学业表现不佳和负面的同伴经历（例如，孤立，受害，拒绝，很少有友谊）有助于冠心病的内在问题的出现，但这种风险将是通过资源（例如，应对的促进育儿和社会化，教师和父母的支持）来减轻可以通过新颖的干预措施来定位。这项工作以以下目的为指导。目标1：比较更改在与关键CHD和CC的儿童的社会，学术和情感功能中中学至中学，并检查冠心病与CC的这些领域之间的预测协会。目标2：确定占损害或缓冲劣势的个人和环境资源 CHD幸存者与CCC的学术，社会和情感功能会随着时间的流逝而发挥作用。 AIM 3：确定特定冠心明星医疗风险（冠心病类型，治疗，围手术期并发症）和环境资源解释随着时间的流逝，社会，学术和情感功能方面的冠心园幸存者之间的变异性。