Wheless James W
Le Bonheur Comprehensive Epilepsy Program, University of Tennessee Health Science Center, Memphis, TN 38105, USA.
Epilepsy Behav. 2006 Jun;8(4):756-64. doi: 10.1016/j.yebeh.2006.03.010. Epub 2006 May 3.
The social and health consequences associated with epilepsy are often magnified among patients with refractory epilepsy. Despite recent advances in the treatment of seizure disorders, many people with epilepsy continue to suffer from uncontrolled seizures and adverse side effects from medical therapy. This survey is the first to focus solely on the experiences, attitudes, and quality of life of a refractory epilepsy population, both those with the condition and their caregivers. To participate in this survey, respondents had to currently be experiencing seizures or troubling treatment side effects and had to have tried at least two different epilepsy medications. These survey data represent three groups of participants (n = 903): those with epilepsy who self-reported on their condition (Group 1, n = 503), the caregivers of those with refractory epilepsy (Group 2, n = 200), and those with epilepsy who had their condition reported on by a caregiver (Group 3, n = 200). This survey revealed that the negative consequences associated with epilepsy tend to be greater among those experiencing treatment side effects and a greater number of seizures. Physicians must take into account medication side effects and quality-of-life issues when treating patients with epilepsy.
与癫痫相关的社会和健康后果在难治性癫痫患者中往往会被放大。尽管近年来癫痫发作疾病的治疗取得了进展，但许多癫痫患者仍遭受癫痫发作无法控制以及药物治疗带来的不良副作用。这项调查首次专门聚焦难治性癫痫患者群体（包括患者本人及其护理人员）的经历、态度和生活质量。要参与这项调查，受访者目前必须正在经历癫痫发作或困扰的治疗副作用，并且必须尝试过至少两种不同的抗癫痫药物。这些调查数据代表了三组参与者（n = 903）：自我报告病情的癫痫患者（第1组，n = 503）、难治性癫痫患者的护理人员（第2组，n = 200）以及由护理人员报告病情的癫痫患者（第3组，n = 200）。这项调查显示，在经历治疗副作用和癫痫发作次数较多的人群中，与癫痫相关的负面后果往往更大。医生在治疗癫痫患者时必须考虑药物副作用和生活质量问题。
