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To present the background, rationale, details pertaining to use and essential computational steps, synopsis of findings to date, and future directions for the International Classification of Cognitive Disorders in Epilepsy (IC‐CoDE)—an initiative of the ILAE Neuropsychology Task Force. Examined are: (a) the 6 steps leading to the derivation of a cognitive phenotype from neuropsychological test data with an accompanying case example, (b) concise review of all IC‐CoDE research to date, (c) summary of identified correlates of IC‐CoDE outcomes, and (d) future research and clinical directions for the initiative. The IC‐CoDE is computationally uncomplicated with individual or group data and represents a novel approach leading to new insights in the neuropsychology of epilepsy, with applications to diverse datasets internationally informing the reliability and validity of the approach. The IC‐CoDE represents a novel approach to the analysis and interpretation of neuropsychological data in epilepsy that offers to advance a global taxonomy of cognitive disorders in epilepsy facilitating international collaboration and big data science.
To present the background, rationale, details pertaining to use and essential computational steps, synopsis of findings to date, and future directions for the International Classification of Cognitive Disorders in Epilepsy (IC‐CoDE)—an initiative of the ILAE Neuropsychology Task Force. Examined are: (a) the 6 steps leading to the derivation of a cognitive phenotype from neuropsychological test data with an accompanying case example, (b) concise review of all IC‐CoDE research to date, (c) summary of identified correlates of IC‐CoDE outcomes, and (d) future research and clinical directions for the initiative. The IC‐CoDE is computationally uncomplicated with individual or group data and represents a novel approach leading to new insights in the neuropsychology of epilepsy, with applications to diverse datasets internationally informing the reliability and validity of the approach. The IC‐CoDE represents a novel approach to the analysis and interpretation of neuropsychological data in epilepsy that offers to advance a global taxonomy of cognitive disorders in epilepsy facilitating international collaboration and big data science.
ObjectiveBehavioral problems in children with new onset epilepsies have been well established in the literature. More recently, the literature indicates the presence of unique behavioral patterns or phenotypes in youth with epilepsy that vary significantly in vulnerability and resilience to behavioral problems. This study contrasts the interpretation of behavioral risk as inferred from cross‐sectional versus latent group analytic perspectives, as well as the presence, consistency, stability, and progression of behavioral phenotypes in youth with new onset epilepsy and sibling controls over 3 years.MethodsThree hundred twelve participants (6–16 years old) were recruited within 6 weeks of their first recognized seizure along with 223 unaffected siblings. Each child's behavior was recorded by parents and teachers frequently over 36 months using the Child Behavior Checklist (CBCL), and each child completed self‐report measures of depression symptoms over 36 months. Measures were evaluated cross‐sectionally and longitudinally to identify clusters with prototypical behavioral trajectories.ResultsCross‐sectional analyses exhibited a pattern of generalized and undifferentiated behavioral problems compared to sibling controls at baseline and prospectively. In contrast, latent trajectory modeling identified three distinct behavior phenotype clusters across all raters (parents, teachers, and youth) over baseline and longitudinal assessments. CBCL Cluster 1 (~30% of youth with epilepsy) exhibited behavior similar to/better than controls, Cluster 2 (~50%) exhibited moderate behavior issues, and Cluster 3 (~20%) exhibited the most pronounced/problematic behavior, falling into Achenbach's clinically relevant behavior range. Behavior within clusters remained stable and consistent. Teachers' and children's behavior assessments corresponded to these cluster groupings consistently over 36 months. Predictors of cluster membership include seizure syndrome type and social determinants of health.SignificanceThis study demonstrates the varying public health perspectives of behavioral risk in youth with epilepsy that result as a function of analytic approach as well as the presence of distinct latent behavioral trajectory phenotypes over time in youth with new onset epilepsy.
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