Development of the quality of life in epilepsy inventory for adolescents: The QOLIE-AD-48

Development of the quality of life in epilepsy inventory for adolescents: The QOLIE-AD-48
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DOI:
10.1111/j.1528-1157.1999.tb00828.x
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发表时间:
1999-08-01
期刊:
影响因子:
5.6
通讯作者:
Camfield, C
Camfield, C
中科院分区:
医学1区
文献类型:
--
作者:
Cramer, JA;Westbrook, LE;Camfield, C

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目的:我们报告了一种评估青少年癫痫患者健康相关生活质量(HRQOL)的工具的开发。方法:选取197例11 ~ 17岁英语青少年癫痫患者,填写88项测试问卷。还包括掌握和自尊量表来评估外部效度。家长同时完成一份包含2个项目的问卷来评估孩子的HRQOL。青少年和家长的问卷在2-4周内重复进行。在基线时收集人口统计信息和有关癫痫发作的信息,同时评估全身和神经毒性。结果:QOLIE-AD-48量表共8个子量表,共48个项目:癫痫影响(12个项目)、记忆/注意力(10个项目)、对癫痫的态度(4个项目)、身体功能(5个项目)、病耻感(6个项目)、社会支持(4个项目)、学校行为(4个项目)、健康感知(3个项目)和总总结得分,得分越高表明HRQOL越好。内部结构效度在八个维度的单因素解决方案中得到证明。所有相关性在p < 0.05水平上均有统计学意义。通过Cronbach's alpha系数估计的内部一致性信度,总结得分为0.74,范围从低至0.52(三项健康感知量表)到0.73-0.94(其他单项量表)。整体量表的重测信度为0.83,综合得分与自我效能和自尊两种外部效度量表的相关系数分别为0.65和0.54。综合评分的统计学差异表明,随着癫痫发作严重程度的降低,青少年的HRQOL越来越好(无癫痫发作= 77 +/- 13,低= 70 +/-)。17例,高= 63 +/- 17)。结论:这些数据描述了一种评估青少年癫痫患者HRQOL的可靠工具的发展。实证分析提供了强有力的证据,表明QOLIE-AD-48是青少年癫痫患者的可靠和有效措施。
Purpose: We report the development of an instrument to assess health-related quality of life (HRQOL) in adolescents with epilepsy.Methods: A sample of 197 English-speaking adolescents (aged 11-17 years) with epilepsy completed a test questionnaire of 88 items. Also included were mastery and self-esteem scales to assess external validity. A parent simultaneously completed an Ii-item questionnaire to evaluate the child's HRQOL. Both adolescent and parent questionnaires were repeated in 2-4 weeks. Demographic information and information pertaining to seizures were collected at baseline along with assessment of systemic and neurologic toxicity.Results: The QOLIE-AD-48 contains 48 items in eight sub scales: epilepsy impact (12 items), memory/concentration (10), attitudes toward epilepsy (four), physical functioning (five), stigma (six), social support (four), school behavior (four), health perceptions (three), and a total summary score, with higher scores indicating better HRQOL. Internal construct validity was demonstrated in a single-factor solution for the eight dimensions. All correlations were statistically significant at p < 0.05 level. Internal consistency reliability estimated by Cronbach's alpha coefficient was 0.74 for the summary score and ranged from a low of 0.52 (three-item Health Perceptions Scale) to 0.73-0.94 for the other individual scales. Good test retest reliability was found for the overall measure (0.83), Summary score correlations with the two external validity scales, self-efficacy and self-esteem were 0.65 and 0.54, respectively. Statistically significant differences in summary scores indicating that HRQOL was increasingly better for adolescents as seizure severity decreases (no seizures = 77 +/- 13, low = 70 +/-. 17, high = 63 +/- 17) were found among seizure-severity groups.Conclusions: These data describe the development of a robust instrument to evaluate HRQOL in adolescents with epilepsy. Empiric analyses provide strong evidence that the QOLIE-AD-48 is both a reliable and valid measure for adolescents with epilepsy.