Frequency of and factors associated with antiseizure medication discontinuation discussions and decisions in patients with epilepsy: A multicenter retrospective chart review

Abstract

Objective Guidelines suggest considering antiseizure medication (ASM) discontinuation in patients with epilepsy who become seizure‐free. Little is known about how discontinuation decisions are being made in practice. We measured the frequency of, and factors associated with, discussions and decisions surrounding ASM discontinuation. Methods We performed a multicenter retrospective cohort study at the University of Michigan (UM) and two Dutch centers: Wilhelmina Children's Hospital (WCH) and Stichting Epilepsie Instellingen Nederland (SEIN). We screened all children and adults with outpatient epilepsy visits in January 2015 and included those with at least one visit during the subsequent 2 years where they were seizure‐free for at least one year. We recorded whether charts documented (1) a discussion with the patient about possible ASM discontinuation and (2) any planned attempt to discontinue at least one ASM. We conducted multilevel logistic regressions to determine factors associated with each outcome. Results We included 1058 visits from 463 patients. Of all patients who were seizure‐free at least one year, 248/463 (53%) had documentation of any discussion and 98/463 (21%) planned to discontinue at least one ASM. Corresponding frequencies for patients who were seizure‐free at least 2 years were 184/285 (65%) and 74/285 (26%). The probability of discussing or discontinuing increased with longer duration of seizure freedom. Still, even for patients who were 10 years seizure‐free, our models predicated that in only 49% of visits was a discontinuation discussion documented, and in only 16% of visits was it decided to discontinue all ASMs. Provider‐to‐provider variation explained 18% of variation in whether patients discontinued any ASM. Significance Only approximately half of patients with prolonged seizure freedom had a documented discussion about ASM discontinuation. Discontinuation was fairly rare even among low‐risk patients. Future work should further explore barriers to and facilitators of counseling and discontinuation attempts.

Non‐discontinuation of antiseizure medication in seizure‐free epilepsy patients

“…In contrast to a recent study on a more heterogeneous patient population (including children, adolescents and patients with ASM polytherapy) [8], non-discontinuation of ASM per se was not associated with shorter duration of seizure freedom, although there was an association between non-discontinuation of ASM and duration of seizure freedom ≤10 years. Differences in the findings from our study may be explained through different patient populations, as the aforementioned study included children.…”

“…It is crucial, however, that this decision is the result of a shared decision‐making process, necessitating a discussion of the pros and cons with the patient. Such a discussion was documented in approximately half of the index visits, confirming the findings of previous studies [8, 14]. Still, our results showing that ASM might be discontinued even after decades of seizure freedom under ASM suggest that there is still much room to improve.…”

“…As duration since last seizure is one of the strongest predictors for remaining seizure-free, ASM discontinuation is usually recommended if the patient has been without seizures for a minimum of 2 years [3,4]. However, a significant proportion of patients remain on ASM long beyond that time [8]. As long-term ASM therapy may be associated with significant adverse effects [9,10], which reduce quality of life [11,12] and impose financial burdens on the healthcare system [13], it is important to identify factors associated with lack of discontinuation or significant dose reduction of ASM.…”

“…Previous studies on seizure-free patients have shown that ASM discontinuation is discussed in only 30%-50% of outpatient visits [8,14]. In a recent study on a heterogeneous patient population with focus on the first decade of seizure freedom including children, adolescents and adults treated in monotherapy and polytherapy, the decision to attempt ASM discontinuation was independently associated with four variables: longer duration of seizure freedom, treatment with an older generation ASM, self-limiting epilepsy syndrome and lower estimated risk of seizure recurrence as calculated with the antiepileptic drug withdrawal risk retrieval tool [6,8]. In the light of these considerations, this study aims to examine factors associated with non-discontinuation (i.e., lack of either discontinuation or dose reduction of at least 25%) of ASM monotherapy in seizure-free patients.…”

Variation in seizure risk increases from antiseizure medication withdrawal among patients with well‐controlled epilepsy: A pooled analysis

“…): Adults with epilepsy, excluding high‐risk features (eg, juvenile myoclonic epilepsy), who were seizure free at least 2 years were randomized to discontinue (by approximately 20% every other week until off) versus continue ASMs, from one hospital's catchment area in Norway. Note that 146/149 (98%) of analyzed patients in the Lossius study followed their assigned protocol. Real‐world retrospective multi‐institution observational cohort 17 : All patients at least 1 years old at the time of their first outpatient visit when they were seizure free for at least 1 year, excluding specific high‐risk features (eg, juvenile myoclonic epilepsy), were followed over maximally 7 years, from three health systems (University of Michigan; Stichting Epilepsie Instellingen Nederland; and Wilhelmina Childrens Hospital). Despite lack of randomization, this study provided a key methodological advantage over other withdrawal cohorts: this cohort followed all patients regardless of whether they withdrew ASMs and recorded the day on which it was decided to withdraw ASMs as documented in the electronic medical record.…”