Single‐item measure for assessing quality of life in children with drug‐resistant epilepsy

Abstract

SummaryObjectiveThe current study investigated the psychometric properties of a single‐item quality of life (QOL) measure, the Global Quality of Life in Childhood Epilepsy question (G‐QOLCE), in children with drug‐resistant epilepsy.MethodData came from the Impact of Pediatric Epilepsy Surgery on Health‐Related Quality of Life Study (PESQOL), a multicenter prospective cohort study (n = 118) with observations collected at baseline and at 6 months of follow‐up on children aged 4–18 years. QOL was measured with the QOLCE‐76 and KIDSCREEN‐27. The G‐QOLCE was an overall QOL question derived from the QOLCE‐76. Construct validity and reliability were assessed with Spearman's correlation and intraclass correlation coefficient (ICC). Responsiveness was examined through distribution‐based and anchor‐based methods.ResultsThe G‐QOLCE showed moderate (r ≥ 0.30) to strong (r ≥ 0.50) correlations with composite scores, and most subscales of the QOLCE‐76 and KIDSCREEN‐27 at baseline and 6‐month follow‐up. The G‐QOLCE had moderate test‐retest reliability (ICC range: 0.49–0.72) and was able to detect clinically important change in patients' QOL (standardized response mean: 0.38; probability of change: 0.65; Guyatt's responsiveness statistics: 0.62 and 0.78). Caregiver anxiety and family functioning contributed most strongly to G‐QOLCE scores over time.SignificanceResults offer promising preliminary evidence regarding the validity, reliability, and responsiveness of the proposed single‐item QOL measure. The G‐QOLCE is a potentially useful tool that can be feasibly administered in a busy clinical setting to evaluate clinical status and impact of treatment outcomes in pediatric epilepsy.

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

“…Quality of Life in Childhood Epilepsy (QoLCE) is a parent‐reported PROM. It has four questionnaire versions with different numbers of items: QoLCE‐76, QoLCE‐55, QoLCE‐16, and a single item G‐QoLCE (Table and ) . The original QoLCE‐76 was developed by a literature review and by adapting items from established instruments.…”

“…Results that were reported previously using the QoLCE‐55 and QoLCE‐76 were comparable to those generated using the QoLCE‐16 model, providing evidence of construct validity (Table ). The G‐QoLCE is an overall QoL single‐item question derived from QoLCE‐76 with evidence of good construct validity and responsiveness (Table ) …”

“…It has four questionnaire versions with different numbers of items: QoLCE-76, QoLCE-55, QoLCE-16, and a single item G-QoLCE (Table 1 and 2). [27][28][29][30][31][32][33][34] The original QoLCE-76 was developed by a literature review and by adapting items from established instruments. A focus group of epilepsy patients and professionals reviewed the questionnaire for its content and clarity, but this was not described thoroughly, so was rated doubtful for its risk of bias (Table 4, Appendix S2).…”

“…33 Results that were reported previously using the QoLCE-55 and QoLCE-76 were comparable to those generated using the QoLCE-16 model, providing evidence of construct validity ( with evidence of good construct validity and responsiveness (Table 4). 34 The Impact of Paediatric Epilepsy Scale (IPES) is an 11-item parent-report PROM ( Table 1 and 2). 35,36 Item development has not been published.…”

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

“…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] ]. Both QOLCE and CHEQOL have been used internationally for numerous evaluative studies and have been translated into other languages for use [ [26] , [27] , [28] , [29] , [30] , [31] , [32] , [33] , [34] , [35] , [36] , [37] , [38] , [39] , [40] , [41] , [42] , [43] , [44] , [45] , [46] , [47] , [48] , [49] , [50] , [51] ].…”