Families are content to discontinue antiepileptic drugs at different risks than their physicians

Purpose: To define the risk of seizure recurrence (RSR) that families and physicians would accept before discontinuing antiepileptic drugs (AEDs) for children with controlled epilepsy. Methods: A questionnaire was completed by families of 76 children with epilepsy greater than or equal to 3 months seizure-free and by their attending epilepsy specialist (n = 4). Results: Forty-two percent of families were unwilling to discontinue AEDs with an RSR of 25%. In contrast, 20% were willing to accept a >75% RSR. Several factors differentiated the risk acceptable to families: previous seizure frequency (risk adverse with intermediate frequency), multiple seizure types (risk taking), grade or grades repeated in school (risk adverse), and the family's strategy of playing lotteries, Although families and physicians were prepared to accept similar median RSR (35 and 40%, respectively), individual answers did not correlate (r(2) = -0.07). Physicians were unable to predict the families response (r(2) = 0.09). Conclusions: Our current practice is to discontinue AEDs after 2 years of seizure-free results in seizure recurrence of 30-40%. This risk may seem excessive to more than half of families, whereas other families will risk stopping AEDs at higher risks of recurrence. Physicians are poor judges of the degree of risk that is acceptable to a particular family, which may account in part for the anxiety manifested by families at AED discontinuation.