Patient Perspectives on Antiseizure Medication Discontinuation: A Mixed-Methods Exploration of Risk Perception, Tolerance, and Counseling

Background and ObjectivesAntiseizure medications (ASMs) are standard treatment for epilepsy. Yet, because ASMs can have adverse effects, guidelines suggest considering ASM withdrawal after a period of seizure freedom. We explored patients' perceived seizure risk, seizure risk tolerance, and risk counseling techniques.MethodsWe interviewed adults at least one-year seizure free, seen for epilepsy across 3 academic institutions. Participants rated their own perceived seizure risks (0 "definitely would not have another seizure"to 10 "definitely would") on vs off ASMs, discussed what minimal clinically important differences would be to justify ASM continuation, rated how likely they might be to withdraw ASMs (1 "not at all likely"to 7 "extremely likely") under different hypothetical seizure risks, and recalled their previous seizure risk counseling.ResultsThe median age (N = 32) was 46 years (interquartile range [IQR] 33-56), with a median of 3 years since their last seizure (IQR 2-11). Participants rated their two-year chance of another seizure on ASMs as a median 1 (IQR 0 to 2) on a "0-10"scale, compared with a median 5 (IQR 4 to 7) off ASMs. Participants believed that their current ASMs have a median effectiveness of 9 (IQR 7-10) on a "0-10"scale. Participants believed that a median effectiveness of 6 (IQR 4 to 9) on a "0-10"scale would warrant remaining on ASMs, although 5 participants would continue their ASM if it extended the time until next seizure by any amount no matter how small. Regarding how likely they would be to withdraw ASMs under different hypothetical seizure risks, median responses on a "1-7"scale were 5 (IQR 1-6) when shown two-year seizure risks of 10% on vs 11% off ASMs, 1 (1-3) if 10% vs 20%, and 1 (1-2) if 25% vs 50%. No participant recalled having been presented with numerical seizure estimates regarding possible ASM withdrawal, yet 16 (50%) would like this information particularly in our presented graphical format.DiscussionParticipants believed that their ASMs were highly effective and were often reluctant to withdraw. Showing hypothetical seizure risks influenced decisions, and graphical risk communication tools were generally welcomed.