Journal article
Leveraging Expertise and Optimizing Clinical Research: Initial Success of a Pediatric Epilepsy Surgery Collaborative
Epilepsia, Vol.64(6), pp.1554-1567
06/2023
DOI: 10.1111/epi.17579
PMID: 36897767
Abstract
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.
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.
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.
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.
Details
- Title: Subtitle
- Leveraging Expertise and Optimizing Clinical Research: Initial Success of a Pediatric Epilepsy Surgery Collaborative
- Creators
- Madison M Berl - George Washington UniversityJennifer I Koop - Medical College of WisconsinAlyssa Ailion - Boston Children's HospitalDonald J Bearden - Emory University School of MedicineKatrina Boyer - Boston Children's HospitalCrystal M Cooper - Jane and John Justin Institute for Mind Health, Neurosciences Center, Cook Children's MedicalAmanda M Decrow - Levine Children's HospitalPriscilla H Duong - Northwestern UniversityPatricia Espe-Pfeifer - University of IowaMarsha Gabriel - Jane and John Justin Institute for Mind Health, Neurosciences Center, Cook Children's MedicalElise Hodges - Department of Psychiatry, University of MichiganDavid F Marshall - Department of Psychiatry, University of MichiganKelly A McNally - The Ohio State UniversityAndrew E Molnar - Vanderbilt University Medical CenterEmily K Olsen - Oregon Health and Science University, Department of Pediatric PsychologyKim E Ono - Emory University School of MedicineKristina E Patrick - University of WashingtonBrianna M Paul - University of California, San FranciscoJonathan Romain - Children's Health of Orange CountyLeigh N Sepeta - George Washington UniversityRebecca L H Stilp - Norton Neuroscience Institute, Department of Pediatric NeurosurgeryGreta N Wilkening - Department of Pediatrics, University of Colorado School of MedicineMichael Zaccariello - Mayo Clinic, Department of Psychiatry and Psychology, Division of Neurocognitive DisordersFrank Zelko - Northwestern UniversityM Scott Perry - Jane and John Justin Institute for Mind Health, Neurosciences Center, Cook Children's MedicalPERC Surgery Workgroup
- Resource Type
- Journal article
- Publication Details
- Epilepsia, Vol.64(6), pp.1554-1567
- DOI
- 10.1111/epi.17579
- PMID
- 36897767
- NLM abbreviation
- Epilepsia
- ISSN
- 0013-9580
- eISSN
- 1528-1167
- Grant note
- DOI: 10.13039/100010621, name: Pediatric Epilepsy Research Foundation
- Language
- English
- Electronic publication date
- 03/10/2023
- Date published
- 06/2023
- Academic Unit
- Psychiatry; Stead Family Department of Pediatrics
- Record Identifier
- 9984375354402771
Metrics
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