Health-related quality of life in children with epilepsy: Development and validation of self-report and parent proxy measures
Health-related quality of life in children with epilepsy: Development and validation of self-report and parent proxy measures
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DOI：
10.1046/j.1528-1157.2003.46302.x
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发表时间：
2003-04-01
期刊：
影响因子：
5.6
通讯作者：
Rosenbaum, P
中科院分区：
文献类型：
--
作者：
Ronen, GM;Streiner, DL;Rosenbaum, P
目的：为了回答需要包括和准确测量的影响和负担的癫痫作为受影响的儿童的干预措施的结果，我们开发和验证自我报告和家长代理应答健康相关的生活质量（HRQL）仪器为青春期前儿童癫痫。方法：我们结合定性和定量的研究方法。项目是从涉及癫痫儿童及其父母的焦点小组讨论中提取的。我们创建的规模格式化与替代成对选项的强迫反应，并使用因子分析，以产生相关的分量表，减少项目的数量。我们检查内部一致性，评估重测信度10-14天，并记录结构validity.Results：样本381癫痫儿童，年龄6-15岁，和他们的父母独立完成了67项问卷，从每个分量表中，我们选择了5个项目。这些措施共有四个分量表，但每个措施都有一个额外的不同分量表。儿童和父母可以辨别差异，并报告不同的HRQL的各个方面之间。内部一致性测量Cronbach的一个是可以接受的所有分量表，结构效度已被证明从几个假设的测试。重测信度检查组内相关系数是令人满意的父母和8岁及以上的儿童。母亲和儿童的反应之间的相关性是穷人到moderate.Conclusions：数据表明，这两个相关的措施，这是很容易管理的癫痫儿童谁是8岁及以上，他们的父母健全的心理测量属性。分量表包括HRQL维度判断最重要的癫痫儿童的自我报告措施和家长的代理响应措施。家长代理措施应是有用的，作为一个补充，儿童自我报告的措施，在评估有效性的父母评估儿童的健康状况，在纵向结果研究，并在HRQL评估的儿童谁是无法独立作出反应。
Purpose: To answer a need to include and measure accurately the impact and burden of epilepsy as outcomes of interventions with affected children, we developed and validated self-report and parent-proxy respondent health-related quality of life (HRQL) instruments for preadolescent children with epilepsy.Methods: We combined qualitative and quantitative research methods. Items were extracted from focus group discussions involving children with epilepsy and their parents. We created scales formatted with alternative paired options of forced responses and used factor analysis to generate relevant subscales and reduce the number of items. We checked internal consistency, assessed test-retest reliability 10-14 days apart, and documented construct validity.Results: A sample of 381 children with epilepsy, age 6-15 years, and their parents independently completed a 67-item questionnaire, from which we chose five items for each subscale. The measures share four subscales, but each measure has an additional distinct subscale. The children and parents could discern differences and report differentially between the various aspects of the HRQL. Internal consistency measured with Cronbach's a was acceptable for all subscales; construct validity has been demonstrated from the testing of several hypotheses. Test-retest reliability examined with the intraclass correlation coefficient was satisfactory for the parents and for children age 8 years and older. The correlations between the mothers' and children's responses was poor to moderate.Conclusions: The data demonstrate sound psychometric properties for both related measures, which are easy to administer for children with epilepsy who are 8 years and older and their parents. The subscales encompass HRQL dimensions judged most important by children with epilepsy for the self-report measure and by parents for the proxy response measure. The parent-proxy measure should be useful as a complement to the child self-report measure in evaluating the validity of parental assessment of the child's health status; in longitudinal outcome research; and in HRQL assessment of children who are unable to respond independently.