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

IF 2.3 Q3 CLINICAL NEUROLOGY

Neurology. Clinical practice Pub Date : 2025-06-01 Epub Date: 2025-05-02 DOI:10.1212/CPJ.0000000000200475

Samuel W Terman, Jordan M Silva, Max Kuster, Jasper Lee, Amanda P Brand, Kara Manuel, Navya Kalia, Micaela Dugan, Marla Reid, Katherine Mortati, Alexandra Tolmasov, Palak S Patel, James F Burke, Arthur C Grant, Chloe E Hill, Susanna S O'Kula

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Abstract

Background and objectives: Antiseizure 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.

Methods: We 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.

Results: The 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.

Discussion: Participants 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.

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患者对抗癫痫药物停药的看法：风险感知、耐受性和咨询的混合方法探索。

背景和目的：抗癫痫药物是治疗癫痫的标准药物。然而，由于ASM可能有副作用，指南建议在癫痫发作自由一段时间后考虑ASM退出。我们探讨了患者的认知癫痫发作风险、癫痫发作风险承受能力和风险咨询技术。方法：我们采访了3个学术机构中至少一年无癫痫发作的成人。参与者对自己的癫痫发作风险进行评分（0分“绝对不会再发作”到10分“绝对会”），讨论在不同假设的癫痫发作风险下，证明ASM继续存在的最小临床重要差异，评估他们可能退出ASM的可能性（1分“完全不可能”到7分“极有可能”），并回忆他们以前的癫痫发作风险咨询。结果：中位年龄（N = 32）为46岁（四分位数范围[IQR] 33-56），距最后一次癫痫发作的中位时间为3年（IQR 2-11）。参与者将他们两年内再次发作的可能性在“0-10”范围内的中位数定为1 (IQR 0到2)，而非asm的中位数为5 （IQR 4到7）。参与者认为他们目前的asm在“0-10”量表上的有效性中位数为9 （IQR 7-10）。参与者认为，在“0-10”量表中，有效性中位数为6 （IQR为4到9）的人可以继续使用ASM，尽管5名参与者会继续使用ASM，如果它延长了下一次癫痫发作的时间，无论多小。关于在不同假设的癫痫发作风险下他们退出asm的可能性，当显示两年癫痫发作风险为10% vs 11%时，“1-7”量表的中位数反应为5 (IQR 1-6)，如果10% vs 20%，则为1(1-3)，如果25% vs 50%，则为1（1-2）。没有参与者回忆说，他们已经收到了关于ASM可能消退的癫痫发作的数值估计，但有16人（50%）希望以我们提供的图形格式获得这些信息。讨论：参与者相信他们的asm非常有效，并且经常不愿意退出。显示假设的癫痫发作风险会影响决策，图形化风险沟通工具普遍受到欢迎。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Neurology. Clinical practice CLINICAL NEUROLOGY-

CiteScore

4.00

自引率

0.00%

发文量

期刊介绍： Neurology® Genetics is an online open access journal publishing peer-reviewed reports in the field of neurogenetics. The journal publishes original articles in all areas of neurogenetics including rare and common genetic variations, genotype-phenotype correlations, outlier phenotypes as a result of mutations in known disease genes, and genetic variations with a putative link to diseases. Articles include studies reporting on genetic disease risk, pharmacogenomics, and results of gene-based clinical trials (viral, ASO, etc.). Genetically engineered model systems are not a primary focus of Neurology® Genetics, but studies using model systems for treatment trials, including well-powered studies reporting negative results, are welcome.