Developmental Progression of Youth with Critical Congenital Heart Defects

在美国，每年有超过 40,000 名儿童出生时患有先天性心脏病 (CHD)。 生存率的提高极大地降低了早期死亡率，但我们的研究还存在巨大差距 了解幸存者的社会心理发展以及造成关键社会、 学业和情感成果。大多数研究都集中在神经发育和行为方面 患有先心病的幼儿存在缺陷，并且越来越多的证据表明情绪功能存在困难 出现在青春期。相比之下，我们对赤字的性质和时间了解相对较少。 受神经发育风险影响的其他领域，例如童年中期和 青春期。因此，迫切需要使用严格的方法进行纵向研究 评估先心病幸存者在整个发展过程中社会、学业和情感功能的变化 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 改善冠心病幸存者一生的生活质量。该提案的目的是开展 对危重先心病幸存者的社会、学业和情感功能进行纵向评估 从小学到中学的过渡。采用严谨、多方法、多信息的设计， 评估四年级和五年级的同伴、老师和自我报告的社会行为、接受度和友谊 教室里有 180 名患有严重先心病的儿童。神经认知、学业、情感和家庭功能将 在家访中对 CHD 幸存者和人口统计匹配的对照同学进行 1:1 评估 （抄送）。对家庭和学校环境中的发育进展和保护因素的评估将 两年后，过渡到中学后重复。我们将研究解释的因素 CHD 幸存者结果的变异性以及 CHD 幸存者之间的差异和比较 同学们。这将捕获与先天性心脏病特定以及一般发育过程相关的风险。 我们的前提是不良的学习成绩和消极的同伴经历（例如孤立、受害、 拒绝、很少的友谊）会导致先心病中出现内化问题，但这种风险将是 通过资源（例如，协助性养育和应对的社会化、教师和家长的支持）来缓解 可以作为新干预措施的目标。这项工作以以下目标为指导。目标 1：比较变化 患有严重 CHD 和 CC 的儿童在从 小学到中学，并检查这些领域中 CHD 与 CC 的预测关联。 目标 2：确定造成损害或缓冲恶化的个人和环境资源 CHD 幸存者与 CC 的随时间推移的学业、社交和情感功能。目标 3：识别 CHD 特异性 医疗风险（CHD 类型、治疗、围手术期并发症）和解释的环境资源 随着时间的推移，冠心病幸存者的社交、学业和情感功能存在差异。

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.