Mezgebe Meron, Akhtar-Danesh Gileh-Gol, Streiner David L, Fayed Nora, Rosenbaum Peter L, Ronen Gabriel M
Mercer University College of Pharmacy and Health Sciences, Mercer University, Atlanta, GA, USA.
Michael G. DeGroote School of Medicine, McMaster University, Hamilton, ON, Canada.
Epilepsy Behav. 2015 Nov;52(Pt A):239-43. doi: 10.1016/j.yebeh.2015.09.009. Epub 2015 Nov 6.
Our objective was to compare the quality of life (QoL) of children with epilepsy to that of typical children and children with cerebral palsy (CP). We measured self- and proxy-reported QoL of children with epilepsy and contrasted that with data for typical children (European KIDSCREEN project) and children with CP (SPARCLE study). Children ages 8-12 years with epilepsy were recruited from six Canadian sites. Same-aged children with CP and children in the general population aged 8-11 years came from several European countries. All participants completed the KIDSCREEN-52 questionnaire. Our results showed no clinically important differences (>0.5 SD) between self-reported QoL in 345 children with epilepsy compared with 489 children with CP or 5950 children in the general population. However, parents reported clinically important differences between the epilepsy and the other groups in five KIDSCREEN-52 domains. Compared with the CP group, parents of children with epilepsy reported better QoL in physical well-being (Cohen d=0.81), social support (d=0.80), and autonomy (d=0.72). Parents reported poorer QoL in the domains of mood and emotions compared with both contrast groups (d=-0.72 and d=-0.53), and in the domain of bullying compared with the CP group (d=-0.51). Families should find comfort in the results, which indicate that children with epilepsy do not perceive any important differences in QoL compared with their typical peers. The comparisons of parental reports detect their group-specific observations and worries that need to be addressed by the health-care providers and may require specifically designed assessment batteries followed by appropriate interventions.
我们的目标是比较癫痫患儿与正常儿童以及脑瘫（CP）患儿的生活质量（QoL）。我们测量了癫痫患儿自我报告和他人代理报告的生活质量，并将其与正常儿童（欧洲儿童生活质量研究项目）和脑瘫患儿（SPARCLE研究）的数据进行对比。8至12岁的癫痫患儿从加拿大的六个地点招募。同龄的脑瘫患儿以及8至11岁的普通人群中的儿童来自几个欧洲国家。所有参与者都完成了儿童生活质量量表-52（KIDSCREEN-52）问卷。我们的结果显示，345名癫痫患儿自我报告的生活质量与489名脑瘫患儿或5950名普通人群中的儿童相比，在临床上没有显著差异（>0.5标准差）。然而，家长报告称，在儿童生活质量量表-52的五个领域中，癫痫患儿组与其他组之间存在临床上的显著差异。与脑瘫组相比，癫痫患儿的家长报告其子女在身体健康（科恩d值=0.81）、社会支持（d=0.80）和自主性（d=0.72）方面的生活质量更好。与两个对比组相比，家长报告称癫痫患儿在情绪和情感领域的生活质量较差（d=-0.72和d=-0.53），与脑瘫组相比，在欺凌领域的生活质量也较差（d=-0.51）。家庭应从这些结果中得到慰藉，结果表明癫痫患儿与正常同龄人相比，并未察觉到生活质量有任何重大差异。家长报告的比较揭示了他们特定群体的观察结果和担忧，医疗保健提供者需要解决这些问题，可能需要专门设计的评估量表，随后进行适当的干预。
