Terman Samuel W, Silva Jordan M, Kuster Max, Lee Jasper, Brand Amanda, Manuel Kara, Kalia Navya, Dugan Micaela, Reid Marla, Mortati Katherine, Tolmasov Alexandra, Patel Palak S, Burke James F, Grant Arthur C, O'Kula Susanna S, Hill Chloe E
University of Michigan, Department of Neurology, Ann Arbor, MI, USA.
University of Michigan Medical School, Ann Arbor, MI, USA.
Epilepsy Res. 2025 Jun 19;217:107615. doi: 10.1016/j.eplepsyres.2025.107615.
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.
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.
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.
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.
抗癫痫药物(ASMs)是癫痫的标准治疗方法。然而,ASMs有不良反应,且癫痫发作风险会随着癫痫发作缓解时间的延长而降低。指南考虑在癫痫发作缓解一段时间后停用ASMs。然而,探索患者如何做出这一决定的研究却很少。我们询问了患者认为哪些决策因素与停用ASMs相关。
我们对来自三个学术机构的癫痫成年患者进行了一项混合方法研究,这些患者至少有一年无癫痫发作。这包括一个半结构化访谈脚本,用于评估对癫痫发作、ASMs和停用ASMs的态度。
我们采访了32名参与者。支持停用ASMs的因素包括当前的副作用(如头晕、镇静)、对长期不良反应的担忧、致畸性、服药和补充处方的不便、感觉癫痫发作缓解表明他们“治愈了”,或对癫痫后果的低担忧。然而,许多原因支持继续治疗,例如对癫痫发作及其心理社会后果的恐惧、服用ASMs几乎没有感觉到负面影响,或者总体上利大于弊。患者指出,如果已知该药物会导致严重不良反应(如癌症),或者医生可以保证停药后无癫痫发作,他们可能会考虑停用ASMs。
出现了许多主题,包括支持继续使用ASMs的原因(如对癫痫发作及其心理社会后果的恐惧、认为继续使用ASMs几乎没有负面影响),但也有许多反对继续使用ASMs的原因(如副作用、不便)。鉴于患者对治疗和咨询的偏好存在异质性,关于继续使用ASMs多长时间的讨论应该高度个体化。