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

IF 2.3 3区医学 Q2 BEHAVIORAL SCIENCES Epilepsy & Behavior Pub Date : 2025-02-24 DOI:10.1016/j.yebeh.2025.110334

Francesca Chiesi , Carlotta Tagliaferro , Pietro Cappelletto , Carmen Barba

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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.

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重新评估儿童癫痫患者健康相关生活质量的自我报告和代理报告方法：一项范围综述

本综述旨在评估癫痫儿童健康相关生活质量（HRQoL）的具体指标，包括患者报告和代理报告，以确定其在临床环境中的适用性。我们检索了PubMed， Web of Science, PsycINFO Scopus，以确定儿童癫痫问卷具有更好的测量特性和/或包括代理和家长报告的研究。然后，我们选择了分析儿童和照顾者评分之间一致性的研究。我们确定了五个量表，即QoLPES， HARCES， pedsql -癫痫模块和CHEQoL-25，并观察到代理报告和儿童自我报告之间有中等到高度的一致性。CHEQoL-25似乎是更可取的，因为它有良好的记录的心理测量特性，高可用性，以及代理和子版本之间的充分一致。这一范围综述强调需要使用能够从照顾者和儿童那里收集信息的prom， CHEQoL-25是评估癫痫儿童HRQol的最佳候选。

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来源期刊

Epilepsy & Behavior 医学-行为科学

CiteScore

5.40

自引率

15.40%

发文量

385

审稿时长

43 days

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.