Abstracts

RATIONALE: The impact of pediatric epilepsy on the parent/family has not been well studied in quality of life research. We used a generic and an epilepsy-specific questionnaire to assess child health status and parental concerns for children with epilepsy.
METHODS: Parents of children with epilepsy aged 1-18 years attending the neurology clinic over a 6 month period completed two validated questionnaires. The Epilepsy Outcome Scale (EOS), designed for use by parents/carers of adults with epilepsy and intellectual disability, was used as it addressed issues most relevant to pediatric epilepsy [Espie et al., 1998]; parents rated their concerns in response to 40 questions about seizures, drugs, potential injury and daily life. The Child Health Questionnaire (CHQ) is a 28 item, multidimensional measure of physical, psychosocial and family domains of health [Landgraf et al., 1996]; normative data are available for a representative sample of 5414 Australian children. Demographic and clinical data (seizure type, epilepsy syndrome, seizure frequency, drug therapy) were also collected.
RESULTS: Questionnaires were returned for 165 patients (67% response); mean age 9.7 years, 58% male. Seizures were generalized 39%, partial 51% or mixed 8%. Epilepsy was idiopathic 26%, symptomatic 46% or cryptogenic 27%. Seizure frequency was [gte]weekly in 42% and [gte]2 drugs were prescribed in 52%. The greatest overall concerns on the EOS related to drugs, with [gt]50% parents responding [italic]often[/italic] and [italic]very often[/italic] to concerns on 8 questions about continued treatment and potential harmful effects of drugs. 59% were similarly concerned about seizures causing brain damage and [gt]40% about fatal consequences of seizures. Significantly higher EOS total scores (greater concerns) were found in children with mixed seizures (p[lt]0.05), frequent seizures (p[lt]0.01) and multiple drugs (p[lt]0.001); no difference was found for age, gender or syndrome classification. Mean CHQ scale and summary scores were significantly lower (poorer health status) when compared to the normative sample (p[lt]0.001), the largest effect sizes being for parent impact scales. Physical health summary scores decreased with increasing seizure frequency and number of drugs, were lower for mixed seizures, but did not differ by age, gender or syndrome classification.
CONCLUSIONS: Children with epilepsy have poorer health status and this impacts significantly on parents, their greatest concerns being for potential harmful effects of drugs and the risk of brain-damaging or fatal seizures. Increasing epilepsy severity correlates with lower health status and greater parental concerns.
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