Department of Neurology, Rudolf Magnus Institute of Neuroscience, University Medical Centre Utrecht, PO Box 85500, 3508 GA, Utrecht, The Netherlands.
J Neurol. 2011 Jan;258(1):37-43. doi: 10.1007/s00415-010-5677-2. Epub 2010 Jul 24.
Having epilepsy has a large impact on one's well-being, but often seizure frequency and severity do not explain self-reported quality of life. We hypothesized that one's personal coping style is more important. In this study, 105 patients attending the outpatient neurological clinic at the University Medical Centre in Utrecht, the Netherlands, with a diagnosis of partial epilepsy, aged 17-80 years, completed questionnaires. Demographic information, disease characteristics, health-related quality of life (HRQoL), and coping styles were obtained by postal-validated HRQoL questionnaires: the EQ5D and RAND-36 and the Utrecht Coping List. A passive coping style explained 45% of the variance in the mental component of HRQoL and was more important than 'objective' seizure-related measures. Confounders such as employment, gender, and side-effects of treatment explained another 6%. Passive coping style also influenced the physical component of the HRQoL, but here seizure-related factors predominated. Overall, epilepsy patients showed a more avoiding coping style, and female patients a less active coping style and more reassuring thoughts, compared to the Dutch population. The personal coping style of patients appears to be more important than seizure-related measures in predicting mental aspects of quality of life. Coping style characteristics rather than disease characteristics should guide clinical decision-making in patients with epilepsy. Further studies should investigate the effect on HRQoL of behavioral interventions to improve coping.
患有癫痫会对一个人的幸福感产生重大影响,但通常情况下,癫痫发作的频率和严重程度并不能解释自我报告的生活质量。我们假设个人的应对方式更为重要。在这项研究中,荷兰乌得勒支大学医学中心神经科门诊的 105 名被诊断为部分性癫痫的 17-80 岁患者完成了问卷调查。通过邮寄的方式,获得了人口统计学信息、疾病特征、健康相关生活质量(HRQoL)和应对方式的信息,调查问卷包括 EQ5D、RAND-36 和乌得勒支应对清单。被动应对方式解释了 HRQoL 心理成分的 45%,比“客观”的与癫痫相关的测量更重要。混杂因素,如就业、性别和治疗的副作用,解释了另外的 6%。被动应对方式也会影响 HRQoL 的身体成分,但这里与癫痫相关的因素占主导地位。总的来说,与荷兰人群相比,癫痫患者表现出更回避的应对方式,女性患者则表现出较少的积极应对方式和更多的安慰性想法。与癫痫相关的测量相比,患者的个人应对方式似乎对预测生活质量的心理方面更为重要。应对方式特征而不是疾病特征应指导癫痫患者的临床决策。进一步的研究应该调查行为干预对改善应对方式和提高 HRQoL 的影响。