Abstracts

RATIONALE: We hypothesized that parents would not value a prophylactic medication for febrile seizures unless the treatment efficacy exceeded a 75% risk reduction and that side effects would further reduce their interest. METHODS: The families of 42 children with febrile seizures were recruited after pediatric or neuropediatric consultation for their child with febrile seizures. A mail questionnaire was completed >4 weeks after recruitment. It addressed the family's willingness to pay for a hypothetical treatment for febrile seizures (without side effects) with relative risk reductions for future febrile seizures of 25%, 50%, 75%, and 100%. The scenario was then modified to include the side effect profiles of either daily phenobarbital or valproic acid, or intermittent diazepam prophylaxis. Covariates included the nature of the child's febrile seizure(s), familiarity with febrile seizures, experiences at the time of febrile seizures or with medication side effects, education, income, mastery and trait anxiety. RESULTS: 22/42 families completed 38 questionnaires. For two parent families the correlation between parent's answers was low (rs=0.255) therefore family questionnaires were considered independently. There was a dramatic inflection in parents' willingness to pay for 100% risk reduction as opposed to 75% or lower risk reductions. Introduction of side effects dramatically reduced the value attached to each level of treatment benefit. Nevertheless, a few parents (3/38) would pay "as much as it takes" to be rid of their child's recurrence risk. CONCLUSIONS: No currently available prophylaxis has demonstrated efficacy in excess of 75% risk reduction with limited side effects. Given our data, most families should not be interested in preventative therapies after pediatric or neuropediatric consultation. However, there remain parents who would pay "as much as it takes" to avoid a recurrent febrile seizure. When prophylactic medication has been established as reducing parental anxiety and family disruption, then its use may have a role within the management strategy for these families.