Francesca Chiesi , Carlotta Tagliaferro , Pietro Cappelletto , Carmen Barba
{"title":"Reappraising self-report and proxy-report measures for assessing health-related quality of life in pediatric epilepsy: A scoping review","authors":"Francesca Chiesi , Carlotta Tagliaferro , Pietro Cappelletto , Carmen Barba","doi":"10.1016/j.yebeh.2025.110334","DOIUrl":null,"url":null,"abstract":"<div><div>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.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"165 ","pages":"Article 110334"},"PeriodicalIF":2.3000,"publicationDate":"2025-02-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Epilepsy & Behavior","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S1525505025000733","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"BEHAVIORAL SCIENCES","Score":null,"Total":0}
引用次数: 0
Abstract
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.
期刊介绍:
Epilepsy & Behavior is the fastest-growing international journal uniquely devoted to the rapid dissemination of the most current information available on the behavioral aspects of seizures and epilepsy.
Epilepsy & Behavior presents original peer-reviewed articles based on laboratory and clinical research. Topics are drawn from a variety of fields, including clinical neurology, neurosurgery, neuropsychiatry, neuropsychology, neurophysiology, neuropharmacology, and neuroimaging.
From September 2012 Epilepsy & Behavior stopped accepting Case Reports for publication in the journal. From this date authors who submit to Epilepsy & Behavior will be offered a transfer or asked to resubmit their Case Reports to its new sister journal, Epilepsy & Behavior Case Reports.