Reappraising self-report and proxy-report measures for assessing health-related quality of life in pediatric epilepsy: A scoping review

: 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.