This scoping review aimed to evaluate specific measures of health-related quality of life (HRQoL) in children with epilepsy including patient- and proxy-reports, to determine their suitability for use in the clinical setting. We searched PubMed, Web of Science, PsycINFO Scopus for studies on the childhood epilepsy questionnaires identified as having better measurement properties and/or including proxy and parent reports. Then, we selected the studies that analyzed the agreement between child and caregiver ratings. We identified five scales i.e., the QoLPES, the HARCES, the PedsQL-Epilepsy Module, and the CHEQoL-25 and observed a moderate to high agreement between the proxy-reports and child self-reports. The CHEQoL-25 appears to be preferable due to its well-documented psychometric properties, high usability, and adequate agreement between proxy and child versions. This scoping review highlights the need to use PROMs that allow to gather information from both the caregiver and child, with the CHEQoL-25 being the best candidate for assessing HRQol in children with epilepsy.

The aim of this study was the translation and cultural adaptation (TCA) of the Spanish version of the16-item Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-16) and an initial assessment of its psychometric properties.

The English version of the QOLCE-16 was cross-culturally adapted into Spanish using a back TCA procedure. Subsequently, for the process of validation of the Spanish version of QOLCE-16, the parents of 75 children with epilepsy (CWE) completed the QOLCE-16 questionnaire, the Pediatric Quality-of-Life Inventory (PedsQL™ 4.0), and the Pediatric Sleep Questionnaire (PSQ) twice in an interval of 7-10 days. The psychometric properties of the four domains of functioning (cognitive, emotional, social, and physical functioning subscales) were analyzed, together with the total QOLCE-16 score using Classical Test Theory.

The scores of the Spanish version of the QOLCE-16 were obtained (alpha coefficient: 0.882, intraclass coefficient: 0.945). The standard error of measurement for the total score was 4.58, and the minimal detectable change was 13.44. Construct validity was tested using Confirmatory Factor Analysis. The estimates of the loadings for the four factors were higher than 0.35 and significant (α = 0.05). The four-factor model for QOLCE-16 [Chi- squared (p = 0.0540), comparative fit index = 0.985, Tucker-Lewis index = 0.982, root mean square error of approximation = 0.056 (0.000-0.0987), weighted root mean square residual = 0.707] showed good fit to these data. Convergent validity with PedsQL™ 4.0. was 0.791 and the discriminant validity of the QOLCE-16 with PSQ was -0.280.

The Spanish version of the QOLCE-16 displays good psychometric properties of validity and reliability. All goodness-of-fit indices represent a good model fit, maintaining the multidimensional Health-related quality-of-life (HRQoL) model of the original English version. The Spanish version of this test can be used reliably to assess HRQoL in CWE in a Spanish-speaking population.

To develop an Arabic translation of the Quality of Life in Children with Epilepsy-55 questionnaire (QOLCE-55), and to assess its validity and reliability to be readily used in Arabic and Egyptian cultures.

The original English version of the QOLCE-55 was translated into Arabic using a forward-backward translation method, and then a cross-sectional survey was conducted including 100 children with epilepsy aged 4-18 years. Caregivers of children completed the Arabic version of the QOLCE-55. Assessment of psychometric properties of the translated questionnaire was conducted using test-retest reliability, internal consistency, and convergent and divergent validity.

The translated questionnaire showed excellent test-retest reliability with the intra-class correlation coefficient for all questionnaire domains, as well as the overall questionnaire ranging from 0.91 to 0.98. Cronbach alpha exceeded 0.7 denoting good internal consistency except for the emotional functioning scale. Convergent and divergent validity assessment showed that items of all domains significantly correlated with their scale scores with r > 0.4 and these correlations were much higher than correlations with other scales' scores, consistent with good convergent and divergent validity. The mean total HRQOL score was 65.63 ± 8.79 with the highest score for social functioning domain and lowest score for physical functioning domain.

The Arabic version of the QOLCE-55 can be considered a suitable, reliable, and valid tool to assess the HRQOL of children with epilepsy through their caregivers' reports.