Leveraging expertise and optimizing clinical research: Initial success of a pediatric epilepsy surgery collaborative

Madison M. Berl, Department of Neuropsychology, Departments of Psychiatry and Behavioral Sciences, Children's Research Institute, Children's National Hospital, George Washington University, Washington, DC, USA.
Jennifer I. Koop, Pediatric Neuropsychology, Children's Wisconsin, Medical College of Wisconsin Department of Neurology, Milwaukee, Wisconsin, USA.
Alyssa Ailion, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts, USA.
Donald J. Bearden, Children's Healthcare of Atlanta, Emory University School of Medicine, Atlanta, Georgia, USA.
Katrina Boyer, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts, USA.
Crystal M. Cooper, Neurosciences Center, Cook Children's Medical Center, Jane and John Justin Institute for Mind Health, Fort Worth, Texas, USA.
Amanda M. Decrow, Division of Pediatric Psychology and Neuropsychology, Atrium Health Levine Children's Hospital, Charlotte, North Carolina, USA.
Priscilla H. Duong, Ann and Robert H. Lurie Children's Hospital of Chicago, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Patricia Espe-Pfeifer, Department of Psychiatry & Pediatrics, University of Iowa Hospitals and Clinics, Ames, Iowa, USA.
Marsha Gabriel, Neurosciences Center, Cook Children's Medical Center, Jane and John Justin Institute for Mind Health, Fort Worth, Texas, USA.
Elise Hodges, Department of Psychiatry, University of Michigan, Ann Arbor, Michigan, USA.
David F. Marshall, Department of Psychiatry, University of Michigan, Ann Arbor, Michigan, USA.
Kelly A. McNally, Department of Pediatric Psychology and Neuropsychology, Department of Pediatrics, Nationwide Children's Hospital, The Ohio State University, Columbus, Ohio, USA.
Andrew E. Molnar, Department of Psychiatry and Behavioral Sciences, Vanderbilt University Medical Center, Nashville, Tennessee, USA.
Emily K. Olsen, Department of Pediatric Psychology, Oregon Health and Science University, Portland, Oregon, USA.
Kim E. Ono, Children's Healthcare of Atlanta, Emory University School of Medicine, Atlanta, Georgia, USA.
Kristina E. Patrick, Department of Neurology, Department of Neurosciences, Seattle Children's Hospital, University of Washington, Seattle, Washington, United States.
Brianna M. Paul, Department of Neurology, University of California San Francisco, San Francisco, California, USA.
Jonathan Romain, Children's Health of Orange County, Orange, California, USA.
Leigh N. Sepeta, Department of Neuropsychology, Departments of Psychiatry and Behavioral Sciences, Children's Research Institute, Children's National Hospital, George Washington University, Washington, DC, USA.
Rebecca L. Stilp, Department of Pediatric Neurosurgery, Norton Neuroscience Institute, Louisville, Kentucky, USA.
Greta N. Wilkening, Department of Pediatrics, University of Colorado School of Medicine, Aurora, Colorado, USA.
Michael Zaccariello, Department of Psychiatry and Psychology, Division of Neurocognitive Disorders, Mayo Clinic, Rochester, Minnesota, USA.
Frank Zelko, Ann and Robert H. Lurie Children's Hospital of Chicago, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
M Scott Perry, Neurosciences Center, Cook Children's Medical Center, Jane and John Justin Institute for Mind Health, Fort Worth, Texas, USA.

Document Type

Journal Article

Publication Date

3-10-2023

Journal

Epilepsia

DOI

10.1111/epi.17579

Keywords

IQ; cohort; consortium; presurgical; processing speed; working memory

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.

Department

Psychiatry and Behavioral Sciences

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