Validation of the PedsQL Epilepsy Module: A pediatric epilepsy-specific health-related quality of life measure

Validation of the PedsQL Epilepsy Module: A pediatric epilepsy-specific health-related quality of life measure
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DOI:
10.1111/epi.13875
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发表时间:
2017-11-01
期刊:
影响因子:
5.6
通讯作者:
Varni, James W.
Varni, James W.
中科院分区:
医学1区
文献类型:
--
作者:
Modi, Avani C.;Junger, Katherine F.;Varni, James W.

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目的:为了验证一个简短而可靠的癫痫特异性,健康相关的生活质量(HRQOL)的措施,在儿童与各种癫痫发作类型,治疗,和人口统计学特征。方法:这项国家验证研究在美国的五个癫痫中心进行。5-18岁的青少年和2-18岁诊断为癫痫的青少年的照顾者完成了PedsQL癫痫模块和其他问卷,以建立癫痫特异性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。进行因素分析,和内部一致性(克朗巴赫的阿尔法),重测信度,结构效度进行了assessed.Results:从430名儿童癫痫(M-年龄= 9.9岁,范围2-18岁,46%的女性,62%的白色:非西班牙裔,76%的单药治疗,54%的活动性癫痫发作)和他们的照顾者进行了分析。最终的PedsQL癫痫模块是一个29项测量,包括5个分量表(即,影响,认知,睡眠,执行功能和情绪/行为)与平行的儿童和照顾者的报告。内部一致性系数范围为0.70-0.94。结构的有效性和收敛表现在几个方面,包括与癫痫发作的结果,抗癫痫药物(AED)的副作用,以及执行,认知和情绪/行为functioning.Significance建立措施的强大关系:PedsQL癫痫模块是一个可靠的衡量HRQOL与其有效性的强有力的证据,在临床和研究设置的癫痫频谱。
Objective: 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.Methods: 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.Results: Questionnaires were analyzed from 430 children with epilepsy (M-age = 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.Significance: 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.