Abstract
Objective
Improve data-driven research to inform clinical decision-making with pediatric epilepsy surgery patients by expanding the Pediatric Epilepsy Research Consortium Epilepsy Surgery Workgroup to include neuropsychological data. This paper 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.
Methods
Pediatric neuropsychologists from 18 institutions completed surveys regarding neuropsychological practice and impact of involvement in the collaborative. Neuropsychological data was entered through an online database. Descriptive analyses examined 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.
Results
Positive impact of participation was evident by attendance, survey responses, and 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 IQs were below to low average with weaknesses in working memory and processing speed. FSIQ was lowest for patients with younger age of seizure onset, daily seizures, and MRI abnormalities.
Significance
We established a collaborative network and fundamental infrastructure to address questions outlined by the Epilepsy Research Benchmarks. There is a wide range in age and IQ of patients considered for pediatric epilepsy surgery, yet it appears 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.
MAR