患者对抗癫痫药物停药的看法：对风险认知、耐受性和咨询的混合方法探索
Patient Perspectives on Antiseizure Medication Discontinuation: A Mixed-Methods Exploration of Risk Perception, Tolerance, and Counseling.
作者信息
Terman Samuel W, Silva Jordan M, Kuster Max, Lee Jasper, Brand Amanda P, Manuel Kara, Kalia Navya, Dugan Micaela, Reid Marla, Mortati Katherine, Tolmasov Alexandra, Patel Palak S, Burke James F, Grant Arthur C, Hill Chloe E, O'Kula Susanna S
机构信息
Department of Neurology, University of Michigan, Ann Arbor.
University of Michigan Medical School, Ann Arbor.
出版信息
Neurol Clin Pract. 2025 Jun;15(3):e200475. doi: 10.1212/CPJ.0000000000200475. Epub 2025 May 2.
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") vs 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 ASMs as a median 1 (IQR 0 to 2) on a "0-10" scale, compared with a median 5 (IQR 4 to 7) 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% vs 11% 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.
背景与目的
抗癫痫药物（ASMs）是癫痫的标准治疗方法。然而，由于ASMs可能有不良反应，指南建议在癫痫发作得到控制一段时间后考虑停用ASMs。我们探讨了患者对癫痫发作风险的认知、癫痫发作风险耐受性以及风险咨询技巧。
方法
我们对3家学术机构中至少1年无癫痫发作的成年癫痫患者进行了访谈。参与者对自身与ASMs相关的癫痫发作风险进行评分（0分表示“肯定不会再次发作”，10分表示“肯定会发作”），讨论继续使用ASMs的最小临床重要差异，评估在不同假设的癫痫发作风险下停用ASMs的可能性（1分表示“完全不可能”，7分表示“极有可能”），并回忆他们之前接受的癫痫发作风险咨询。
结果
中位年龄（N = 32）为46岁（四分位间距[IQR] 33 - 56），自上次发作以来的中位时间为3年（IQR 2 - 11）。参与者将自己在停用ASMs情况下再次发作的两年概率在“0 - 10”量表上的中位评分为1（IQR 0至2），而在使用ASMs情况下为5（IQR 4至7）。参与者认为他们目前使用的ASMs在“0 - 10”量表上的中位有效性为9（IQR 7 - 10）。参与者认为在“0 - 10”量表上有效性中位值为6（IQR 4至9）时才值得继续使用ASMs，不过有5名参与者表示，如果使用ASMs能使下次发作时间延长，无论延长多少，他们都会继续使用。关于在不同假设的癫痫发作风险下停用ASMs的可能性，在“1 - 7”量表上的中位回答如下：当显示停用ASMs和使用ASMs的两年癫痫发作风险分别为10%和11%时为5（IQR 1 - 6）；当为10%和20%时为1（1 - 3）；当为25%和50%时为1（1 - 2）。没有参与者回忆起曾被告知关于停用ASMs的癫痫发作数字估计，但有16名（50%）参与者希望得到此类信息，特别是我们所展示的图形形式的信息。
讨论
参与者认为他们使用的ASMs非常有效，通常不愿停药。展示假设的癫痫发作风险会影响决策，图形化的风险沟通工具普遍受到欢迎。
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