AMMERMAN SPINA BIFIDA STUDY

本子项目是利用由NIH/NCRR资助的中心赠款提供的资源的众多研究子项目之一。子项目和研究者（PI）可能已经从另一个NIH来源获得了主要资金，因此可以在其他CRISP条目中表示。列出的机构是中心的，不一定是研究者的机构。患有脊柱裂的青少年表现出多种神经认知缺陷，这些缺陷被认为会影响心理社会适应。据信，高达40%至50%的儿童患有非语言学习障碍（NLD）的神经心理障碍，而非语言学习障碍又与不良的社会适应和内化行为问题（如抑郁症）密切相关。一般来说，患有脊柱裂的青少年表现出行为、社会和人格调整方面的问题，尽管在这一人群中存在相当大的差异。这项名为“学习和发展项目”的研究正在研究脊柱裂青少年神经心理损伤的类型和严重程度，特别是NLD特征与心理社会功能之间的关系。具体来说，正在招募160名10-17岁的脊柱裂青少年及其家人。根据特定的标准，在有全国民主联盟和没有全国民主联盟的人中平均分配。青少年按性别平均分为4个年龄组（10-12岁、12-14岁、14-16岁和16-17岁）。在基线，青少年完成一个全面的神经心理学电池，这将用于创建两个组，更充分地阐明NLD的概况。在这个时候，父母和青少年还完成了孩子的社会心理功能和家庭调整的几项措施。18个月后，他们接受了行为、社会和人格功能的后续评估。在两个评估点，青少年的老师完成一些心理社会功能的测量。第三组75名患有NLD的青少年，但没有脊柱裂或脑积水，也正在招募并在每个时间点执行相同的方案。最后，招募了第四组75名没有NLD、脊柱裂或脑积水的青少年作为对照。本研究的主要目的是：(1)对比四组，以确定在青少年发展的不同阶段社会心理失调的不同模式；(2)确定NLD档案对后续社会心理功能的预测效用，并确定NLD患者的社会心理问题是否随着年龄的增长而增加；(3)测试家庭功能是否调节神经心理损伤和社会心理适应之间的关联。本研究的结果将阐明脊柱裂青少年神经心理损伤与社会心理功能之间的因果关系，描述有助于早期识别和设计更有效干预措施的危险因素，并揭示青春期各年龄阶段的社会心理功能模式。

This subproject is one of many research subprojects utilizing the resources provided by a Center grant funded by NIH/NCRR. The subproject and investigator (PI) may have received primary funding from another NIH source, and thus could be represented in other CRISP entries. The institution listed is for the Center, which is not necessarily the institution for the investigator. Adolescents with spina bifida exhibit a variety of neurocognitive deficits that are thought to impact psychosocial adjustment. It is believed that up to 40% and 50% have neuropsychological impairments indicative of nonverbal learning disability (NLD), which in turn is strongly associated with poor social adjustment and internalizing behavior problems (e.g., depression). In general, adolescents with spina bifida display problems in behavioral, social, and personality adjustment, although there is considerable variability in this population. This study (entitled the Learning and Development Project) is examining the relationship between type and severity of neuropsychological impairment, in particular the NLD profile, and psychosocial functioning in adolescents with spina bifida. Specifically, 160 adolescents with spina bifida between the ages of 10-17 years and their families are being recruited. They are divided equally between those with and without NLD using specific criteria. Adolescents are divided equally between four age groups (10-12, 12-14, 14-16, 16-17 years) and by gender. At baseline, adolescents complete a comprehensive neuropsychological battery, which will be used to create the two groups and more fully elucidate the NLD profile. At this time, parents and adolescents also complete several measures of the child's psychosocial functioning and family adjustment. Eighteen months later, they receive a follow-up assessment measuring behavioral, social, and personality functioning. At both assessment points, the adolescent's teacher completes several measures of psychosocial functioning. A third group of 75 adolescents with NLD, but without spina bifida or hydrocephalus, is also being recruited and administered the same protocol at each time point. Finally, a fourth group of 75 adolescents without NLD or spina bifida or hydrocephalus, is being recruited to serve as controls. Primary goals of the study are to (1) contrast the four groups to identify differential patterns of psychosocial maladjustment at different points in adolescent development, (2) determine the predictive utility of the NLD profile to subsequent psychosocial functioning, and to determine if psychosocial problems increase with age in those with NLD, and (3) test whether family functioning moderates the association between neuropsychological impairment and psychosocial adjustment. Results from this study will elucidate causal relationships between neuropsychological impairment and psychosocial functioning in adolescents with spina bifida, delineate risk factors that will contribute to early identification and the design of more effective interventions, and reveal patterns of psychosocial functioning across age in adolescence.