Modi Avani C, Junger Katherine F, Mara Constance A, Kellermann Tanja, Barrett Lauren, Wagner Janelle, Mucci Grace A, Bailey Laurie, Almane Dace, Guilfoyle Shanna M, Urso Lauryn, Hater Brooke, Hustzi Heather, Smith Gigi, Herrmann Bruce, Perry M Scott, Zupanc Mary, Varni James W
Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, U.S.A.
Medical University of South Carolina, Charleston, South Carolina, U.S.A.
Epilepsia. 2017 Nov;58(11):1920-1930. doi: 10.1111/epi.13875. Epub 2017 Sep 13.
To validate a brief and reliable epilepsy-specific, health-related quality of life (HRQOL) measure in children with various seizure types, treatments, and demographic characteristics.
This national validation study was conducted across five epilepsy centers in the United States. Youth 5-18 years and caregivers of youth 2-18 years diagnosed with epilepsy completed the PedsQL Epilepsy Module and additional questionnaires to establish reliability and validity of the epilepsy-specific HRQOL instrument. Demographic and medical data were collected through chart reviews. Factor analysis was conducted, and internal consistency (Cronbach's alphas), test-retest reliability, and construct validity were assessed.
Questionnaires were analyzed from 430 children with epilepsy (M = 9.9 years; range 2-18 years; 46% female; 62% white: non-Hispanic; 76% monotherapy, 54% active seizures) and their caregivers. The final PedsQL Epilepsy Module is a 29-item measure with five subscales (i.e., Impact, Cognitive, Sleep, Executive Functioning, and Mood/Behavior) with parallel child and caregiver reports. Internal consistency coefficients ranged from 0.70-0.94. Construct validity and convergence was demonstrated in several ways, including strong relationships with seizure outcomes, antiepileptic drug (AED) side effects, and well-established measures of executive, cognitive, and emotional/behavioral functioning.
The PedsQL Epilepsy Module is a reliable measure of HRQOL with strong evidence of its validity across the epilepsy spectrum in both clinical and research settings.
验证一种简短且可靠的、针对癫痫患者的、与健康相关的生活质量（HRQOL）测量工具，该工具适用于患有各种发作类型、接受不同治疗以及具有不同人口统计学特征的儿童。
这项全国性验证研究在美国的五个癫痫中心进行。年龄在5 - 18岁的青少年以及年龄在2 - 18岁且被诊断为癫痫的青少年的照料者完成了儿童生活质量量表癫痫模块（PedsQL Epilepsy Module）以及其他问卷，以确定该癫痫特异性HRQOL工具的可靠性和有效性。通过病历审查收集人口统计学和医学数据。进行了因子分析，并评估了内部一致性（Cronbach's alphas）、重测信度和结构效度。
分析了430名癫痫儿童（平均年龄M = 9.9岁；年龄范围2 - 18岁；46%为女性；62%为非西班牙裔白人；76%接受单药治疗，54%有活动性发作）及其照料者的问卷。最终的儿童生活质量量表癫痫模块是一个包含29个条目的测量工具，有五个子量表（即影响、认知、睡眠、执行功能和情绪/行为），儿童和照料者的报告相互对应。内部一致性系数范围为0.70 - 0.94。通过多种方式证明了结构效度和收敛效度，包括与发作结果、抗癫痫药物（AED）副作用以及成熟的执行、认知和情绪/行为功能测量指标之间的强关联。
儿童生活质量量表癫痫模块是一种可靠的HRQOL测量工具，在临床和研究环境中，有充分证据表明其在整个癫痫范围内都具有有效性。
