What extent of adverse drug reactions seems acceptable for what degree of seizure reduction in paediatric patients with epilepsy?—An exploratory study on the parents' perspective

Purpose We aimed to explore the perspectives of parents of children with epilepsy regarding the extent of adverse drug reactions (ADRs) of antiseizure medications (ASMs) they are willing to accept for a certain degree of seizure reduction.

Methods We presented a table showing two levels of the likelihood of occurrence (low/high) and two levels of severity (mild/severe) for a number of ADRs including irritability, impairment of attention, and fatigue. For each combination of likelihood and severity, 98 parents were asked to indicate the degree of seizure reduction for which they were willing to accept the given ADR.

Results Even in exchange for seizure-freedom, severe irritability occurring with a high likelihood was unacceptable to 53 % of parents. This applied to 51 % concerning impairment of attention, and to 40 % concerning fatigue. At 50 % seizure reduction, 2 % of parents were willing to accept a high likelihood of occurrence of severe irritability. This applied to 5 % of parents concerning impairment of attention, and 9 % of parents concerning fatigue. With regard to mild forms of ADRs very likely to occur, 16 % of parents considered impairment of attention to be unacceptable despite seizure freedom; this applied to 12 % of parents for irritability, and 6 % of parents for fatigue.

Conclusion Even for seizure freedom or a major reduction in seizures, parents often refused to accept ADRs. Therefore, it is important to consider the parents’ perspective when choosing an ASM, and to find the optimal balance between desired effectiveness and ADRs acceptable to parents and paediatric patients.