Abstracts

Rationale: In children presenting with a presumed first seizure, to determine: (1)quality of life, (2) self-esteem and (3) parental protection. Methods: Children were seen in a tertiary care First Seizure Clinic. Inclusion criteria were age 1 – 17 yrs with an unprovoked event suggestive of seizure. Children were classified as having an epileptic or non-epileptic event. Depending on the age the child, children and the primary caregiver completed all or some of the following questionaires: Child Health Questionnaire (CHQ-PF28, CHQ-CF87), Piers Harris II self- concept scale (PH II) and the Parental Protection Scale (PPS). Results: One hundred and twenty seven children and families were seen in the clinic. Eighty-eight completed the Child Health questionnaires (seizure 67; non-epileptic 21). Compared to normative data, parents reported significantly lower scores for family activity (p<0.03), parental impact time (p<0.03), parental impact emotional (p<0.01) and behavior (p< 0.02). When the seizure group was compared to the non-seizure group, total quality of life scores were significantly lower (p<0.01) with and they also showed limitation on parental personal time and increased distress and worry (p<0.02). Children with a true seizure also experienced significantly lower self-esteem (p<0.01), poorer family cohesion (p<0.04) and experience greater emotional and behavioral difficulties that impacted daily activities (p<0.09) than those with non-seizures. When scores for those with a history of probable seizures were compared to those with only a single seizure the scores were even lower. No differences were seen in self-concept or parental protection when compared to normative data. Conclusions: Our study is the first to show impact on quality of life in children presenting with a presumed first seizure. Parents report a limitation and interruption of family activity and the time available for personal needs, and experience a great deal of emotional worry and concern. This finding is present irrespective of whether the child had a true seizure. Interesting, children with true seizures showed significantly lower quality of life scores than those with non-epileptic events with the lowest scores in those who unknowingly had established epilepsy.