Abstracts

Measuring seizure condition severity is important for predicting psychosocial and psychiatric outcomes in children with epilepsy. Although several methods have been used to measure seizure condition severity, none have included ratings of pediatric epileptic syndromes. A severity rating of these syndromes would provide a more comprehensive understanding of seizure condition severity. The purpose of this study is to describe the development of the Epilepsy Syndrome Severity Scale-Child (ESSS-C).
The Delphi Technique was used to establish severity scores for pediatric epileptic syndromes as defined by the International League Against Epilepsy (ILAE). Pediatric epileptologists were asked to rate the severity of each syndrome on a scale of 1-10 considering: (1) response to medical treatment, (2) seizure severity, and (3) long-term prognosis. Syndrome severity ratings took place in 4 different rounds. Experts provided initial scores in Rounds 1 and 2, and reconsidered their scores in Rounds 3 and 4 in an attempt to reach a consensus.
Initially, 25 pediatric epileptologists participated in the development of the scale and 12 completed all 4 rounds. The median served as the syndrome severity score if the mean and median agreed within .5. Otherwise, whichever of these two numbers that was closest to the mode was used. After Round 4, the median served as the severity score in 34 of the syndromes (only 3 of which were unanimous). In 2 syndromes, the mode was used to establish a severity score. At least one expert was unable to rate 8 syndromes stating that the outcomes (response to medical treatment, seizure severity, and long-term prognosis) were too variable. Syndromes that were rated with high severity scores (9 or 10) or low severity scores (1 or 2) had unanimous or near unanimous ratings. The syndromes with scores between 4 and 8 had wider ranges of ratings.
This study was a first attempt to obtain severity ratings of the pediatric syndromes. While there was consensus on which syndromes were benign and which were castastrophic, there was more variability in the middle reflecting both the variability of these syndromes and the different weights epileptologists attached to different clinical components of the syndromes. Further assessment of this instrument is needed. If future studies confirm the validity of this scale, it could then be used in research as one part of a more comprehensive assessment along with seizure frequency, seizure severity, social impact, antiepileptic drug adverse effects, and illness specific quality of life measures in evaluations of both current and ongoing effects of epilepsy on children.
[Supported by: NIH, NS22416, NR04536]