AMMERMAN SPINA BIFIDA STUDY

这个子项目是许多研究子项目中利用 资源由NIH/NCRR资助的中心拨款提供。子项目和 调查员(PI)可能从NIH的另一个来源获得了主要资金， 并因此可以在其他清晰的条目中表示。列出的机构是 该中心不一定是调查人员的机构。 患有脊柱裂的青少年表现出各种神经认知缺陷，这些缺陷被认为会影响心理社会适应。据认为，多达40%和50%的人患有神经心理障碍，表明非言语学习障碍(NLD)，这反过来又与不良的社会适应和内在化行为问题(如抑郁症)密切相关。总体而言，患有脊柱裂的青少年在行为、社交和个性适应方面表现出问题，尽管在这一人群中存在相当大的变异性。这项名为“学习与发展项目”的研究旨在探讨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。具体地说，正在招募160名10至17岁的脊柱裂青少年及其家人。他们使用特定的标准在患有和不患有NLD的人之间平均分配。青少年按性别平均分为四个年龄组(10-12岁、12-14岁、14-16岁、16-17岁)。在基线时，青少年完成全面的神经心理学单元，这将被用来创建两组，并更全面地阐明NLD的概况。此时，父母和青少年还完成了孩子心理社会功能和家庭适应的几项测量。18个月后，他们接受一项后续评估，评估他们的行为、社交和人格功能。在这两个评估点上，青少年的老师都要完成几项心理社会功能的测量。第三组有75名患有NLD的青少年，但没有脊柱裂或脑积水，他们也被招募并在每个时间点实施相同的方案。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)对比四组青少年在不同时期心理社会适应不良的不同模式，(2)确定NLD特征对随后心理社会功能的预测效用，并确定NLD患者的心理社会问题是否随年龄增加而增加，以及(3)测试家庭功能是否缓和神经心理障碍和心理社会适应之间的联系。这项研究的结果将阐明脊柱裂青少年神经心理障碍和心理社会功能之间的因果关系，勾勒出有助于早期识别和设计更有效干预措施的危险因素，并揭示青春期心理社会功能随年龄的模式。

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.