Unidade de Pesquisa e Tratamento das Epilepsias (UNIPETE), Universidade Federal de São Paulo - Unifesp, São Paulo, SP, Brazil.
Unidade de Pesquisa e Tratamento das Epilepsias (UNIPETE), Universidade Federal de São Paulo - Unifesp, São Paulo, SP, Brazil.
Epilepsy Behav. 2021 Jul;120:107969. doi: 10.1016/j.yebeh.2021.107969. Epub 2021 May 5.
The present study aimed to validate the 55-item Health-Related Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55) in Brazilian Portuguese and evaluate the relation of its results with clinical data and caregiver burden.
The QOLCE-55 was submitted to translation, back-translation, and cultural adaptation in a pilot sample with 20 subjects. To ensure the psychometric properties of validation, the validation of the QOLCE-55 was carried out in a sample of 45 patients with epilepsy aged between 4 and 18 years and their parents or caregivers and compared with the results of other quality-of-life instruments, namely, the QVCE-50 and QOLIE-AD-48, as well as with the SDQ, abrief behavioral screeningquestionnaire. The WASI and SON-R 2½-7 [a] were used for evaluation of intelligence quotient (IQ) and the Burden Interview for the caregiver burden.
Internal consistency measured by Cronbach's alpha coefficient was moderate (0.692; p = 0.264), and the test-retest reliability analyzed by the intraclass correlation coefficient was satisfactory when compared with the results by different examiners on the same day (0.951; p = 0.001) and at different times (0.778; p = 0.001). This version of the QOLCE-55 presented a strong correlation with the QVCE-50 (0.904; p < 0.001) and SDQ (-0.428; p = 0.004) but a low correlation with the QOLIE-AD-48 (0.094; p = 0.729). This version also presented a correlation with IQ (R = 0.456, p = 0.003) and an inverse correlation with the Burden Interview (-0.390; p = 0.012). Low quality of life was associated with the presence of tonic-clonic seizures (p = 0.005), polytherapy (p = 0.003), and low socioeconomic conditions (p = 0.005).
The Brazilian Portuguese version of the QOLCE-55 was confirmed as a reliable and valid scale to assess quality of life in children and adolescents with epilepsy. Behavioral problems, caregiver burden, tonic-clonic seizures, polytherapy, and socioeconomic precariousness were associated with low quality-of-life values, while IQ was positively correlated with the quality of life in this population.
本研究旨在验证巴西葡萄牙文版健康相关生活质量量表在儿童癫痫中的 55 项问卷（QOLCE-55），并评估其结果与临床数据和照顾者负担之间的关系。
将 QOLCE-55 进行翻译、回译和文化适应性预试验，纳入 20 例患者。为确保验证的心理测量学特性，在 45 例年龄在 4 至 18 岁的癫痫患者及其父母或照顾者中进行了 QOLCE-55 的验证，并与其他生活质量量表的结果进行了比较，即 QVCE-50 和 QOLIE-AD-48，以及 SDQ，一种简短的行为筛查问卷。WASI 和 SON-R 2 ½-7 [a] 用于评估智商（IQ）和照顾者负担的负担访谈。
Cronbach's alpha 系数测量的内部一致性为中度（0.692；p=0.264），当与同一天不同检查者的结果（0.951；p=0.001）和不同时间（0.778；p=0.001）的组内相关系数分析时，测试重测信度是令人满意的。该版本的 QOLCE-55 与 QVCE-50（0.904；p<0.001）和 SDQ（-0.428；p=0.004）呈强相关，与 QOLIE-AD-48（0.094；p=0.729）呈低度相关。该版本还与 IQ（R=0.456，p=0.003）呈正相关，与负担访谈呈负相关（-0.390；p=0.012）。生活质量低与强直阵挛性发作（p=0.005）、多种药物治疗（p=0.003）和社会经济条件差（p=0.005）有关。
巴西葡萄牙文版 QOLCE-55 被确认为一种可靠且有效的量表，可用于评估癫痫儿童和青少年的生活质量。行为问题、照顾者负担、强直阵挛性发作、多种药物治疗和社会经济不稳定与低生活质量值相关，而 IQ 与该人群的生活质量呈正相关。
