Developmental Progression of Youth with Critical Congenital Heart Defects

在美国，每年有超过4万名儿童出生时就患有先天性心脏病(CHD)。 存活率的提高极大地降低了早期死亡率，但我们在 了解幸存者的心理社会发展和导致关键社会风险的机制， 学术上和情感上的结果。大多数研究都集中在神经发育和行为方面 先心病儿童的缺陷，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，我们对赤字的性质和时机知之甚少。 其他受神经发育风险影响的领域，如儿童中期和 青春期。因此，迫切需要使用严格的方法进行纵向研究 评估冠心病幸存者在发育过程中社会、学习和情绪功能的变化 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和 在整个生命周期内改善冠心病幸存者的生活质量。这项提议的目标是进行一项 对危重冠心病幸存者的社会、学术和情绪功能的纵向评估 从小学过渡到中学。采用严格、多方法、多信息源的设计，我们将 评估4年级和5年级的同伴、老师和自我报告的社会行为、接受程度和友谊 180名患有严重冠心病的儿童的教室。神经认知、学习、情感和家庭功能 在对冠心病幸存者和人口统计学上匹配的对照同学进行家访时评估为1：1 (抄送)。将评估家庭和学校环境中的发展进展和保护因素 两年后，在过渡到中学之后，再次学习。我们将研究解释以下问题的因素 冠心病存活者之间结局的变异性以及冠心病存活者之间的差异和比较 同学们。这将捕捉与特定的冠心病相关的风险以及一般的发育过程。 我们的前提是学业成绩不佳和消极的同伴经历(例如，孤立、受害、 拒绝，很少的友谊)促成了冠心病内化问题的出现，但这种风险将是 通过以下资源(例如，促进父母养育和应对社会化、教师和父母支持)缓解 可能成为新的干预措施的目标。这项工作以以下目标为指导。目标1：比较变化 在社会、学习和情绪功能方面，患有严重CHD和CC的儿童从 从小学到中学，以及检查这些领域对CHD和CC的预测性关联。 目标2：查明造成#年损害或缓冲恶化的个人和环境资源 CHD幸存者的学习、社交和情绪功能随时间的变化与CC相比。目标3：确定特定于CHD的疾病 医疗风险(冠心病类型、治疗、围手术期并发症)和环境资源 冠心病幸存者的社会、学习和情绪功能随时间的变化。

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.