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）。 生存率的提高大大降低了早期死亡率，但我们在这方面仍有很大的差距。 了解幸存者的心理社会发展和风险机制， 学业和情感上的成果大多数研究都集中在神经发育和行为方面， 有越来越多的证据表明，情绪功能障碍， 出现在青春期。相比之下，我们对财政赤字的性质和时间了解相对较少， 在儿童中期受神经发育风险影响的其他领域，如社交能力， 青春期因此，迫切需要采用严格的方法进行纵向研究， 评估CHD幸存者在整个发育过程中社会、学业和情感功能的变化， 告知新干预措施的时机和目标。我们的长期目标是减少心理社会发病率， 改善CHD幸存者的生命质量。这项建议的目的是进行一项 对2008年至2011年期间危重冠心病幸存者的社会、学业和情绪功能进行纵向评估 从小学到中学的过渡。使用严格的，多方法，多信息设计，我们将 评估同伴，教师和自我报告的社会行为，接受，和友谊在第四和第五年级 180名患有严重CHD的儿童的教室。神经认知、学术、情感和家庭功能将 在对CHD幸存者和人口统计学匹配的对照同学进行家访期间，按1：1进行评估 （CC）.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，在过渡到中学后，重新开始。我们将研究能够解释 CHD幸存者之间结局的变异性以及CHD幸存者与对照组之间的差异 同学这将捕获与CHD特异性以及一般发育过程相关的风险。 我们的前提是，学习成绩差和消极的同伴经历（例如，孤立，受害， 拒绝，很少的友谊）有助于CHD内在化问题的出现，但这种风险将是 通过资源减轻（例如，促进性养育和应对社会化，教师和家长支持）， 可以通过新的干预措施来解决。这项工作的指导目标如下。目标1：比较变更 在社会，学术，和情感功能的儿童与关键的CHD和CC的过渡， 小学到中学，以及检查CHD与CC在这些领域的预测关联。 目标2：确定造成环境损害或缓冲恶化的个人和环境资源， CHD幸存者与CC患者随时间推移的学业、社会和情感功能。目的3：识别CHD特异性 医疗风险（CHD类型、治疗、围手术期并发症）和环境资源， CHD幸存者的社会、学术和情感功能随时间的变化。

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.