A mixed-methods study of patient perspectives on antiseizure medication discontinuation attempts after a period of seizure-freedom

Background Antiseizure medications (ASMs) are the standard treatment for epilepsy. Yet because ASMs can have adverse effects and seizure risk decreases with longer seizure-free periods, guidelines have suggested considering ASM withdrawal after a period of seizure-freedom. However, work exploring patient experience with ASM discontinuation is scarce. We explored patient attitudes regarding past or possible future ASM discontinuation attempts.Methods We conducted a mixed-methods study of adults at least 1 year seizure-free, seen for epilepsy across three institutions. A semistructured interview script assessed views about past or hypothetical future ASM discontinuation attempts.Results We interviewed 32 participants. Seizure-free duration ranged from 1.0 to 35.0 years (median 2.9, IQR 1.6–11.2). 21 (66%) participants reported having tried to discontinue an ASM in the past due to a period of seizure-freedom. 13 participants (43% of 30 who responded to the question) felt that they would still be glad to have tried discontinuation for the knowledge gained even if it resulted in a seizure. This corresponded to 52% (11/21) of patients who had previously attempted ASM discontinuation due to a period of seizure-freedom, compared with 22% (2/9) of patients who had not previously attempted ASM discontinuation (Fisher’s exact test p=0.23). Qualitative responses generally indicated that even a ‘failed’ discontinuation attempt was ‘worth trying’ and could support a patient’s future decision to remain on long-term ASMs without wondering any longer if they really ‘need it.’Conclusions Even ‘failed’ discontinuation attempts may have value due to knowledge gained to support subsequent continuation.