O'Donoghue M F, Duncan J S, Sander J W
Epilepsy Research Group, Institute of Neurology, London, UK.
Brain. 1998 Feb;121 ( Pt 2):317-43. doi: 10.1093/brain/121.2.317.
It is now widely acknowledged that the impact of epilepsy on the individual extends beyond the occurrence of seizures, and that there is a need for outcome measures sensitive to these consequences. Until now these instruments have largely been developed within a 'quality of life' framework. The technical and conceptual difficulties that arise with measuring quality of life have led us to develop a more focused measurement model, the 'Subjective Handicap of Epilepsy' (SHE) scale, based on the World Health Organization's concept of handicap. The scale contains 32 items in six subscales: 'Work and activities' (eight items), 'Social and personal' (four items), 'Self-perception' (five items), 'Physical' (four items), 'Life-satisfaction' (four items) and a 'Change' scale (seven items); and it takes on average < 10 min to complete. The scale's test-retest reliability was found to be satisfactory (intra-class correlation coefficient was 0.8-0.9 in 110 subjects). The test-retest interval (24 h to 8 weeks) had no influence on the reliability. The reliability was also not affected by minor recent fluctuations in seizure frequency. The internal consistency of the scales was 0.8-0.9 (Cronbach's alpha). The construct validity of the scale was examined in a sample of 287 clinic attendees at a university neurology clinic in the UK. The scales were highly sensitive to the handicapping effects of increasing seizure frequency, employment status, the impact of epilepsy on career choice and the subject's own opinion as to the major determinant of their quality of life. The scales were also sensitive, retrospectively, to the benefits of successful epilepsy surgery in a cohort of 105 patients. Scales focusing specifically on handicap were more sensitive to group differences in seizure frequency in the clinic population, and to outcome after epilepsy surgery, than the 'Life-satisfaction' scale and the Epilepsy Surgery Inventory 55 (ESI-55) scales. This supports the contention that measuring 'subjective handicap' may be a more sensitive, and more useful, approach to assessing the impact of interventions on the long-term consequences of epilepsy than current methods.
现在人们普遍认识到，癫痫对个人的影响不仅限于发作的发生，而且需要对这些后果敏感的结果测量指标。到目前为止，这些工具大多是在“生活质量”框架内开发的。测量生活质量时出现的技术和概念难题促使我们基于世界卫生组织的残疾概念，开发了一种更具针对性的测量模型，即“癫痫主观残疾”（SHE）量表。该量表包含32个项目，分为六个分量表：“工作与活动”（8个项目）、“社交与个人”（4个项目）、“自我认知”（5个项目）、“身体”（4个项目）、“生活满意度”（4个项目）和一个“变化”量表（7个项目）；平均完成时间不到10分钟。该量表的重测信度令人满意（110名受试者的组内相关系数为0.8 - 0.9）。重测间隔（24小时至8周）对信度没有影响。信度也不受近期发作频率轻微波动的影响。量表的内部一致性为0.8 - 0.9（克朗巴哈α系数）。在英国一家大学神经科诊所的287名门诊患者样本中检验了该量表的结构效度。该量表对发作频率增加的致残影响、就业状况、癫痫对职业选择的影响以及受试者自己对其生活质量主要决定因素的看法高度敏感。该量表对105名患者队列中成功进行癫痫手术后的益处也具有回顾性敏感性。与“生活满意度”量表和癫痫手术量表55（ESI - 55）相比，专门关注残疾的量表对门诊人群中发作频率的组间差异以及癫痫手术后的结果更敏感。这支持了这样一种观点，即与目前的方法相比，测量“主观残疾”可能是评估干预措施对癫痫长期后果影响的一种更敏感、更有用的方法。
