Leveraging expertise and optimizing clinical research: Initial success of a pediatric epilepsy surgery collaborative.
Leveraging expertise and optimizing clinical research: Initial success of a pediatric epilepsy surgery collaborative.
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利用专业知识和优化临床研究：小儿癫痫手术合作取得初步成功。
作者：
Berl,MadisonM;Koop,JenniferI;Ailion,Alyssa;Bearden,DonaldJ;Boyer,Katrina;Cooper,CrystalM;Decrow,AmandaM;Duong,PriscillaH;Espe-Pfeifer,Patricia;Gabriel,Marsha;Hodges,Elise;Marshall,DavidF;McNally,KellyA;Molnar,AndrewE;O
改善数据驱动的研究，通过扩大儿科癫痫研究联盟癫痫手术（PERC手术）工作组，包括神经心理学数据，为儿科癫痫手术患者的临床决策提供信息。本文报道的过程和初步成功的这一努力，并表征认知功能的最大的多站点小儿癫痫手术队列在美国。MethodsPediatric神经心理学家从18个机构完成了调查，关于神经心理学的做法和参与的影响，在协作。通过在线数据库输入神经心理学数据。描述性分析检查了队列的调查响应和认知功能。统计分析检查哪些患者进行了评估，如果不同的领域，人口统计学，所使用的措施，或癫痫characteristics.ResultsPositive影响的参与是显而易见的出席，调查的反应，和神经心理学数据输入的534术前癫痫患者的综合评分。该队列年龄为6个月至21岁，大多数为白色和非西班牙裔，更有可能拥有私人保险。平均智商（IQ）得分低于平均水平，工作记忆和处理速度较弱。癫痫发作、每日发作和磁共振成像（MRI）异常时年龄较小的患者的全量表智商（FSIQ）最低。重要性我们建立了一个协作网络和基本基础设施来解决癫痫研究基准所概述的问题。考虑进行小儿癫痫手术的患者的年龄和智商有很大的差异，但似乎健康的社会决定因素影响了获得护理的机会。与其他国家队列一致，该美国队列的IQ与癫痫发作严重程度相关。
ObjectiveImprove data‐driven research to inform clinical decision‐making with pediatric epilepsy surgery patients by expanding the Pediatric Epilepsy Research Consortium Epilepsy Surgery (PERC‐Surgery) Workgroup to include neuropsychological data. This article reports on the process and initial success of this effort and characterizes the cognitive functioning of the largest multi‐site pediatric epilepsy surgery cohort in the United States.MethodsPediatric neuropsychologists from 18 institutions completed surveys regarding neuropsychological practice and the impact of involvement in the collaborative. Neuropsychological data were entered through an online database. Descriptive analyses examined the survey responses and cognitive functioning of the cohort. Statistical analyses examined which patients were evaluated and if composite scores differed by domain, demographics, measures used, or epilepsy characteristics.ResultsPositive impact of participation was evident by attendance, survey responses, and the neuropsychological data entry of 534 presurgical epilepsy patients. This cohort, ages 6 months to 21 years, were majority White and non‐Hispanic, and more likely to have private insurance. Mean intelligence quotient (IQ) scores were below to low average, with weaknesses in working memory and processing speed. Full‐scale IQ (FSIQ) was lowest for patients with younger age at seizure onset, daily seizures, and magnetic resonance imaging (MRI) abnormalities.SignificanceWe established a collaborative network and fundamental infrastructure to address questions outlined by the Epilepsy Research Benchmarks. There is a wide range in the age and IQ of patients considered for pediatric epilepsy surgery, yet it appears that social determinants of health impact access to care. Consistent with other national cohorts, this US cohort has a downward shift in IQ associated with seizure severity.