Samuel W. Terman , Jordan M. Silva , Max Kuster , Jasper Lee , Amanda Brand , Kara Manuel , Navya Kalia , Micaela Dugan , Marla Reid , Katherine Mortati , Alexandra Tolmasov , Palak S. Patel , James F. Burke , Arthur C. Grant , Susanna S. O’Kula , Chloe E. Hill
{"title":"Antiseizure medication discontinuation: A mixed-methods exploration of factors considered by patients when approaching decision-making","authors":"Samuel W. Terman , Jordan M. Silva , Max Kuster , Jasper Lee , Amanda Brand , Kara Manuel , Navya Kalia , Micaela Dugan , Marla Reid , Katherine Mortati , Alexandra Tolmasov , Palak S. Patel , James F. Burke , Arthur C. Grant , Susanna S. O’Kula , Chloe E. Hill","doi":"10.1016/j.eplepsyres.2025.107615","DOIUrl":null,"url":null,"abstract":"<div><h3>Objectives</h3><div>Antiseizure medications (ASMs) represent standard treatment for epilepsy. Yet, ASMs have adverse effects, and seizure risk decreases with longer seizure freedom. Guidelines consider ASM withdrawal after a period of seizure freedom. However, work exploring how patients approach this decision is scarce. We inquired what decision-making factors patients feel are relevant to ASM discontinuation.</div></div><div><h3>Methods</h3><div>We conducted a mixed-methods study of adults seen for epilepsy, at least one-year seizure-free, across three academic institutions. This included a semi-structured interview script assessing attitudes towards seizures, ASMs, and ASM discontinuation.</div></div><div><h3>Results</h3><div>We interviewed 32 participants. Factors supporting ASM discontinuation included current side effects (e.g., dizziness, sedation), concern regarding long-term adverse effects, teratogenicity, inconvenience from taking and refilling prescriptions, feeling like seizure freedom demonstrated that they were ‘cured’, or low concern regarding seizure consequences. However, many reasons supported continued treatment, e.g., fear of seizures and their psychosocial consequences, little perceived downside to taking ASMs, or overall more substantial pros than cons. Patients noted that they might consider discontinuing ASMs if the medication was known to cause severe adverse effects (e.g., cancer), or if the doctor could guarantee seizure freedom post-discontinuation.</div></div><div><h3>Conclusion</h3><div>Numerous themes emerged including reasons favoring continued ASMs (e.g., fear of seizures and their psychosocial consequences, perceiving little downside to continued ASMs) but also many reasons against continued ASMs (e.g., side effects, inconvenience). Discussions surrounding how long to continue ASMs should be highly individualized given the heterogeneity of patient preferences regarding treatment and counseling.</div></div>","PeriodicalId":11914,"journal":{"name":"Epilepsy Research","volume":"217 ","pages":"Article 107615"},"PeriodicalIF":2.0000,"publicationDate":"2025-06-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Epilepsy Research","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S0920121125001160","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
引用次数: 0
Abstract
Objectives
Antiseizure medications (ASMs) represent standard treatment for epilepsy. Yet, ASMs have adverse effects, and seizure risk decreases with longer seizure freedom. Guidelines consider ASM withdrawal after a period of seizure freedom. However, work exploring how patients approach this decision is scarce. We inquired what decision-making factors patients feel are relevant to ASM discontinuation.
Methods
We conducted a mixed-methods study of adults seen for epilepsy, at least one-year seizure-free, across three academic institutions. This included a semi-structured interview script assessing attitudes towards seizures, ASMs, and ASM discontinuation.
Results
We interviewed 32 participants. Factors supporting ASM discontinuation included current side effects (e.g., dizziness, sedation), concern regarding long-term adverse effects, teratogenicity, inconvenience from taking and refilling prescriptions, feeling like seizure freedom demonstrated that they were ‘cured’, or low concern regarding seizure consequences. However, many reasons supported continued treatment, e.g., fear of seizures and their psychosocial consequences, little perceived downside to taking ASMs, or overall more substantial pros than cons. Patients noted that they might consider discontinuing ASMs if the medication was known to cause severe adverse effects (e.g., cancer), or if the doctor could guarantee seizure freedom post-discontinuation.
Conclusion
Numerous themes emerged including reasons favoring continued ASMs (e.g., fear of seizures and their psychosocial consequences, perceiving little downside to continued ASMs) but also many reasons against continued ASMs (e.g., side effects, inconvenience). Discussions surrounding how long to continue ASMs should be highly individualized given the heterogeneity of patient preferences regarding treatment and counseling.
期刊介绍:
Epilepsy Research provides for publication of high quality articles in both basic and clinical epilepsy research, with a special emphasis on translational research that ultimately relates to epilepsy as a human condition. The journal is intended to provide a forum for reporting the best and most rigorous epilepsy research from all disciplines ranging from biophysics and molecular biology to epidemiological and psychosocial research. As such the journal will publish original papers relevant to epilepsy from any scientific discipline and also studies of a multidisciplinary nature. Clinical and experimental research papers adopting fresh conceptual approaches to the study of epilepsy and its treatment are encouraged. The overriding criteria for publication are novelty, significant clinical or experimental relevance, and interest to a multidisciplinary audience in the broad arena of epilepsy. Review articles focused on any topic of epilepsy research will also be considered, but only if they present an exceptionally clear synthesis of current knowledge and future directions of a research area, based on a critical assessment of the available data or on hypotheses that are likely to stimulate more critical thinking and further advances in an area of epilepsy research.