Mameniskiene R, Sakalauskaite-Juodeikiene E, Budrys V
Clinic of Neurology and Neurosurgery Faculty of Medicine, Vilnius University, Vilnius, Lithuania; Department of Neurology, Vilnius University Hospital "Santariskiu klinikos", Vilnius, Lithuania.
Clinic of Neurology and Neurosurgery Faculty of Medicine, Vilnius University, Vilnius, Lithuania; Department of Neurology, Vilnius University Hospital "Santariskiu klinikos", Vilnius, Lithuania.
Epilepsy Behav. 2015 May;46:192-7. doi: 10.1016/j.yebeh.2015.03.002. Epub 2015 Apr 4.
For people with epilepsy, knowledge of their disease is an important factor in optimizing the control of their seizures. Better-informed patients can more easily participate in the treatment process, reducing disease-related anxiety and coping better with stigma. This study was developed in a Lithuanian tertiary epilepsy center to assess knowledge of disease among people with epilepsy, to estimate differences in disease knowledge between patient groups, and to evaluate how epilepsy influences patients' daily lives. We asked patients to complete a questionnaire and collected information from outpatient cards on epilepsy etiology, type of seizures, findings of diagnostic tests, and information about patients' antiepileptic drugs. Our results showed that people with epilepsy have poor knowledge about their disease: almost half of the patients did not identify the cause of their illness or their type of seizures; most did not know the results of their EEG and neuroimaging studies. Patients also lacked general knowledge about their disease and implications for lifestyle. However, cognitive deficits were not assessed in this study, and this may have affected the answers where patients were required to recall and name their drugs or the dosage of medication. Almost half of them believed that epilepsy had changed their lives significantly and reported anxiety and constant fear of seizures. Patients were also afraid to have because of the possibility they would also have epilepsy. There is clearly a great need for improved educational intervention for people with epilepsy.
对于癫痫患者而言，了解自身疾病是优化癫痫发作控制的一个重要因素。知识更丰富的患者能够更轻松地参与治疗过程，减轻与疾病相关的焦虑，并更好地应对污名化问题。本研究在立陶宛一家三级癫痫中心开展，旨在评估癫痫患者对疾病的了解程度，估计不同患者群体在疾病知识方面的差异，并评估癫痫如何影响患者的日常生活。我们让患者填写一份问卷，并从门诊病历卡中收集有关癫痫病因、发作类型、诊断检查结果以及患者抗癫痫药物的信息。我们的研究结果表明，癫痫患者对自身疾病了解不足：几乎一半的患者无法确定自己的病因或发作类型；大多数患者不知道自己脑电图和神经影像学检查的结果。患者对自身疾病及其对生活方式的影响也缺乏常识。然而，本研究未评估认知缺陷，这可能影响了患者回忆并说出所用药物或药物剂量的回答。几乎一半的患者认为癫痫极大地改变了他们的生活，并表示存在焦虑以及对癫痫发作的持续恐惧。患者还因担心家人也可能患癫痫而害怕生育。显然，迫切需要对癫痫患者加强教育干预。
