Epilepsy‐specific patient‐reported outcome measures of children's health‐related quality of life: A systematic review of measurement properties

Abstract

Objective To identify and appraise published evidence of the measurement properties for epilepsy‐specific patient‐reported outcome measures (PROMs) of children's health‐related quality of life (HRQoL). Methods We searched multiple databases for studies evaluating the measurement properties of English‐language epilepsy‐specific PROMs of children's HRQoL. We assessed the methodological quality using the COnsensus‐based Standards for the selection of health Measurement INstruments (COSMIN) guidance. We extracted data about the content validity, construct validity, internal consistency, test‐retest reliability, proxy reliability, responsiveness, and precision, and assessed the measurement properties with reference to standardized criteria. Results We identified 27 papers that evaluated 11 PROMs. Methodological quality was variable. Construct validity, test‐retest reliability, and internal consistency were more commonly assessed. Quality of Life in Childhood Epilepsy (QoLCE) questionnaires are parent‐reported and evaluated more than other PROMs; QoLCE‐55 has good and replicated evidence for structural and construct validity and internal consistency. Health‐Related Quality of Life Measure for Children with Epilepsy (CHEQoL) has both child and parent‐reported versions and good evidence of content, structural, and construct validity. Significance This review identified two leading candidate epilepsy‐specific PROMs for measuring health‐related quality of life in children. Establishing evidence of the responsiveness of PROMs is a priority to help the interpretation of meaningful change scores.

Mapping epilepsy-specific patient-reported outcome measures for children to a proposed core outcome set for childhood epilepsy

“…This study is reported in line with the GRIPP2 short form for PPIE (supplementary 2) [ 53 ]. We consulted with a subset of members from our established Advisory Panel, consisting of children with epilepsy and parents, about the two leading candidate questionnaires from our systematic review [ 17 ], QOLCE-55 and CHEQOL. The members of our Advisory Panel responded to a call through national epilepsy charities and clinical services for people with experience of childhood epilepsy to join our Advisory Panel.…”

“…Subsequently, we focused on two leading candidate PROMs with better evidence of robust measurement properties from our prior systematic review [ 17 ]: Quality of Life in Childhood Epilepsy 55-item version (QOLCE-55) parent report and the Health-Related Quality of Life Measure for Children with Epilepsy (CHEQOL) child and parent report [ 18 , 19 ]. The QOLCE-55 is part of the QOLCE family of PROMs, which has four questionnaire versions with different numbers of items (QOLCE 76, QOLCE-55, QOLCE-16, and G-QOLCE) [ [19] , [20] , [21] , [22] , [23] , [24] , [25] ].…”

Fostering research pathways to positive long‐term outcomes for childhood‐onset epilepsy

“…Several PROMs are now available for use in children with epilepsy, and, to guide decisions on choice of measures, there is an emerging literature evaluating the measures' robustness. 4 Such routine, standardized assess-ment of PROMs integrated into clinical care is a critical element in determining the quality of data collected, including the amount of attrition, which is essential to the success of longitudinal studies.…”

“…2,3 Rosic and colleagues do us a great service by taking on this subject, not only in assessing depression, but by doing it repeatedly for 28 months. 4 The sample itself is impressive: 336 children and adolescents completed the study, although the group appeared to be largely heterogeneous.…”

“…A final recommended enhancement to research methods that is likely to expedite identification of malleable early risk factors is increasing the routine collection of a core set of PROMs at diagnosis and continuing periodically throughout the course of epilepsy from early childhood into adulthood. Several PROMs are now available for use in children with epilepsy, and, to guide decisions on choice of measures, there is an emerging literature evaluating the measures’ robustness . Such routine, standardized assessment of PROMs integrated into clinical care is a critical element in determining the quality of data collected, including the amount of attrition, which is essential to the success of longitudinal studies.…”