Programme for Pharmacy, Faculty of Health Sciences, Oslo Metropolitan University, Oslo, Norway; The National Center for Epilepsy, Oslo University Hospital, Oslo, Norway; Department of Pharmacology, Section for Clinical Pharmacology, The National Center for Epilepsy, Oslo University Hospital, Oslo, Norway.
Programme for Pharmacy, Faculty of Health Sciences, Oslo Metropolitan University, Oslo, Norway.
Epilepsy Behav. 2019 Sep;98(Pt A):110-116. doi: 10.1016/j.yebeh.2019.05.021. Epub 2019 Jul 19.
Patients with juvenile myoclonic epilepsy (JME) may have uncontrolled seizures. The purpose of this study was to investigate the use and challenges with antiepileptic drugs (AEDs) and the patients' view of these challenges.
A questionnaire about the use of AEDs, adherence to therapy, and quality of life was given to patients with JME recruited from Drammen Hospital. Data regarding AEDs were confirmed from medical records at Drammen Hospital, Norway (2007-2018). Additional clinical interviews were performed, and a mixed method approach was applied.
Ninety patients with defined JME diagnosis, 54/36 women/men aged 14-39 (mean: 25) years, were included. Only 29 (33%) were seizure-free. Within the last year, 21% experienced generalized tonic-clonic seizures (GTCS), and 68% had myoclonic jerks. Seventy-six (84%) used AEDs, 78% in monotherapy. A total of 10 AEDs were used;: most commonly valproate (n = 33), lamotrigine (n = 27), and levetiracetam (n = 21). Two-thirds of valproate users were men while all other AEDs were used more in females than in men. Valproate and levetiracetam displayed better efficacy against GTCS than lamotrigine. One-third often/sometimes forgot their medication nonintentionally while 14% had intentional poor adherence. The majority reported good quality of life (76%). No significant correlations between the use of AEDs, use of valproate, poor adherence, quality of life score, and seizure freedom were demonstrated. Half of the patients had serum concentrations measured every year, and two-thirds thought this was important. Qualitative interviews elucidated treatment challenges in JME;, adverse effect burden, adherence, and activities of daily life.
Despite the use of AEDs in the majority of patients, only one-third were seizure-free. Other challenges included polypharmacy, the use of valproate in women, and variable adherence. This points to a need for closer follow-up in patients with JME.
青少年肌阵挛癫痫（JME）患者可能会出现癫痫发作不受控制的情况。本研究旨在调查抗癫痫药物（AEDs）的使用情况和面临的挑战，以及患者对这些挑战的看法。
对在德拉门医院招募的 JME 患者进行了关于 AED 使用、治疗依从性和生活质量的问卷调查。挪威德拉门医院（2007-2018 年）的病历中确认了有关 AED 的数据。此外还进行了额外的临床访谈，并应用了混合方法。
共纳入了 90 名明确诊断为 JME 的患者，其中 54 名/36 名女性/男性，年龄 14-39（平均：25）岁。只有 29 名（33%）患者无癫痫发作。在过去的一年中，21%的患者经历过全面强直阵挛发作（GTCS），68%的患者出现过肌阵挛性抽搐。76%（84%）的患者使用了 AED，78%的患者采用单药治疗。共使用了 10 种 AED：最常用的是丙戊酸钠（n=33）、拉莫三嗪（n=27）和左乙拉西坦（n=21）。丙戊酸钠的使用者中有三分之二为男性，而其他 AED 的使用者中女性多于男性。丙戊酸钠和左乙拉西坦对 GTCS 的疗效优于拉莫三嗪。三分之一的患者经常/有时非故意忘记服药，而 14%的患者故意不依从。大多数患者报告生活质量良好（76%）。AED 的使用、丙戊酸钠的使用、依从性差、生活质量评分和癫痫无发作之间未显示出显著相关性。一半的患者每年测量血清浓度，三分之二的患者认为这很重要。定性访谈阐明了 JME 治疗中的挑战，包括不良反应负担、依从性和日常生活活动。
尽管大多数患者使用了 AED，但只有三分之一的患者无癫痫发作。其他挑战包括多药治疗、女性使用丙戊酸钠和不同程度的依从性。这表明 JME 患者需要更密切的随访。
