de Souza Maia Filho Heber, Streiner David L, da Mota Gomes Marleide
Department of Maternal and Child Health, Faculdade de Medicina de Petrópolis. Postgraduation (Doctorate), Institute of Psychiatry/Universidade Federal do Rio de Janeiro (CNPq scholarship), Brazil.
Seizure. 2007 Jun;16(4):324-9. doi: 10.1016/j.seizure.2007.01.010. Epub 2007 Mar 7.
To analyze the validity and reliability of an epilepsy specific health related quality of life (HRQL) instrument (QVCE-50), constructed for Brazilians. The QVCE-50 comprises the following domains: physical (9 items), psychological (18 items), social/familial (7 items), and cognitive/educational (16 items). Items were scored on a four point scale. Domains were equally weighted using percent scores. The questionnaire ends with a quality of life scale scored 0-10 and a space for free observations.
A total of 77 children with epilepsy were consecutively seen in a neuropaediatric ambulatory unit. Parents or caregivers responded to the QVCE-50 and a Portuguese version of ICIS (Impact of Childhood Illness Scale). QVCE-50 was analyzed for internal consistency, reliability, content and concurrent validity. Clinical and socio-demographic variables were also analyzed.
Socio-demographic and clinical variables that differed in at least one domain were age, sex, time since diagnosis, epilepsy family history, and antiepileptic drug used. Internal consistency, analyzed by Cronbach's alpha, showed good results for total and domain scores: physical (0.68), psychological (0.86), socio-familiar (0.70) and cognitive-educational (0.91). Total scores on the QVCE-50 and ICIS are inversely correlated (Pearson's r=-0.74, p<0.0001). The Intraclass Correlation Coefficients for test-retest reliability were acceptable: physical (0.51), psychological (0.62), socio-familiar (0.66), cognitive-educational (0.85) and total (0.77), p<0.0001.
QVCE-50 has good psychometric properties. It is a useful tool for analyzing HRQL in children with epilepsy for Portuguese speakers, especially Brazilians. Other properties should be further tested, such as responsiveness to drug and surgical treatment, capacity of distinguishing among seizure control categories and etiology (with a larger sample) and impact of psychiatric and cognitive co-morbidities.
分析为巴西人构建的癫痫特异性健康相关生活质量（HRQL）工具（QVCE - 50）的有效性和可靠性。QVCE - 50包括以下领域：身体（9项）、心理（18项）、社会/家庭（7项）和认知/教育（16项）。项目采用四点量表计分。各领域使用百分比得分进行同等加权。问卷最后是一个0至10分的生活质量量表以及一个自由填写意见的空间。
在一个神经儿科门诊连续观察了77名癫痫患儿。家长或照料者对QVCE - 50和葡萄牙语版的ICIS（儿童疾病影响量表）进行了回答。对QVCE - 50进行了内部一致性、可靠性、内容和同时效度分析。还分析了临床和社会人口统计学变量。
在至少一个领域存在差异的社会人口统计学和临床变量有年龄、性别、诊断后的时间、癫痫家族史以及使用的抗癫痫药物。通过克朗巴哈系数分析的内部一致性显示，总分和各领域得分结果良好：身体领域（0.68）、心理领域（0.86）、社会/家庭领域（0.70）和认知/教育领域（0.91）。QVCE - 50和ICIS的总分呈负相关（皮尔逊r = -0.74，p < 0.0001）。重测信度的组内相关系数是可接受的：身体领域（0.51）、心理领域（0.62）、社会/家庭领域（0.66）；认知/教育领域（0.85）和总分（0.77），p < 0.0001。
QVCE - 50具有良好的心理测量学特性。对于说葡萄牙语的人，尤其是巴西人，它是分析癫痫患儿HRQL的有用工具。其他特性，如对药物和手术治疗的反应性、区分癫痫控制类别和病因的能力（样本量更大时）以及精神和认知共病的影响，应进一步测试。
