Validation of the Health-Related Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55) for Brazilian Portuguese

Abstract

Objective: 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.

Methods: 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.

Results: 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).

Conclusions: 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.

Keywords: Child; Epilepsy; QOLCE-55; Quality of Life; Validation.