Abstracts

Rationale: Seizure severity has no accepted definition. Caregiver report of seizure severity was evaluated as part of a larger study that included youth & caregiver reported measures of the youth’s seizures, & emotional & social variables that occur in epilepsy. We analyzed what variables were associated with the caregiver’s perception of seizure severity. Methods: Eligible youth in a pediatric epilepsy clinic in a university setting included ages 10-17 years diagnosed with epilepsy for at least 1 year (ICD-9 345 codes) & average intelligence (IQ>85). The Pediatric Symptom Checklist(PSC), a screening tool checklist that rates a child’s behavior, & the Epilepsy Self Efficacy Scale (ESES) which assesses epilepsy self-management, was completed by caregivers. Diagnostic codes & treatments were obtained from record abstraction. A Seizure Form for caregivers was developed based on ILAE criteria to assess seizures, and included onset, frequency, seizure characteristics, duration, & recovery time. Caregivers were also asked to rate how severe or intense seizures were overall. For analysis, ‘mild’ & ‘very mild’ were combined as ‘mild’, & ‘moderate’, ‘severe’, & ‘very severe’ were combined as ‘mod/severe’ & used as our outcome. 52 of the 82 caregivers had complete information & were included in the analysis. Comparison of included & excluded participants showed no significant differences in any variables except that those excluded were more likely to report a longer time since last seizure (majority >1 year), & a lower seizure frequency in the past year (majority = none in past year) than those retained for the analysis. Seizure severity was compared by univariate tests to age, sex, ethnicity, epilepsy type, number of antiepileptic drugs, epilepsy duration, time since last seizure, frequency, preictal aura, ictal fall, ictal incontinence, ictal duration, postictal duration, PSC score, & ESES score. Variables significant at p<.05 were included in a regression model. Results: Ictal duration, postictal duration, & PSC score were independent variables in the model. Mod/severe description by the caregiver is positively associated with increased postictal duration & increased ictal duration. The odds of a seizure being characterized as mod/severe vs mild is 6 times greater for longer postictal duration relative to shorter duration, adjusted for ictal duration and PSC score. The odds of seizure being described as mod/severe vs mild is 4.5 times greater for longer ictal duration relative to shorter duration, adjusted for postictal duration & PSC score. PSC score did not significantly affect severity description. Conclusions: Previous pediatric studies have evaluated either ictal duration or postictal duration as variables involved in seizure severity, with only one study using both. The results indicate that ictal duration & postictal duration contribute to how a caregiver characterizes seizure severity. These should be considered in the development of seizure severity scores. Exploring what influences caregivers’ perception of seizure severity may assist the clinician in understanding the family’s experience of epilepsy.