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Leveraging expertise and optimizing clinical research: Initial success of a pediatric epilepsy surgery collaborative. Epilepsia 2023 Jun;64(6):1554-1567

Date

03/11/2023

Pubmed ID

36897767

DOI

10.1111/epi.17579

Scopus ID

2-s2.0-85150936536 (requires institutional sign-in at Scopus site)   2 Citations

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 (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.

METHODS: Pediatric 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.

RESULTS: Positive 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.

SIGNIFICANCE: We 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.

Author List

Berl MM, Koop JI, Ailion A, Bearden DJ, Boyer K, Cooper CM, Decrow AM, Duong PH, Espe-Pfeifer P, Gabriel M, Hodges E, Marshall DF, McNally KA, Molnar AE, Olsen EK, Ono KE, Patrick KE, Paul BM, Romain J, Sepeta LN, Stilp RLH, Wilkening GN, Zaccariello M, Zelko F, Perry MS, PERC Surgery Workgroup

Authors

Rene Andrade-Machado MD, PhD Assistant Professor in the Neurology department at Medical College of Wisconsin
Pradeep Javarayee MD Assistant Professor in the Neurology department at Medical College of Wisconsin
Jennifer I. Koop Olsta PhD Professor in the Neurology department at Medical College of Wisconsin




MESH terms used to index this publication - Major topics in bold

Child
Cognition
Epilepsy
Humans
Intelligence Tests
Magnetic Resonance Imaging
Neuropsychological Tests
Seizures
Treatment Outcome