Development and assessment of the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE‐16)

Goodwin, Shane W.; Ferro, Mark A.; Speechley, Kathy N.

doi:10.1111/epi.14008

Cited by 31 publications

(46 citation statements)

References 30 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…30 QoLCE-16 has good structural validity and excellent internal consistency across all scales (a = 0.75-0.92) and for the overall scale (α = 0.90). 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).…”

Section: Resultssupporting

confidence: 68%

“…QoLCE‐16 has good structural validity and excellent internal consistency across all scales ( a = 0.75‐0.92) and for the overall scale ( α = 0.90) . 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 ).…”

Section: Resultsmentioning

confidence: 51%

“…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.…”

Section: Resultsmentioning

confidence: 99%

“…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).…”

Section: Resultsmentioning

confidence: 99%

See 3 more Smart Citations

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

et al. 2020

View full text Add to dashboard Cite

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.

show abstract

Section: Resultssupporting

confidence: 68%

Section: Resultsmentioning

confidence: 51%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 2 more Smart Citations

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

et al. 2020

View full text Add to dashboard Cite

show abstract

“…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 55item 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 .…”

Section: Introductionmentioning

confidence: 99%

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

Crudgington

Collingwood

Bray

et al. 2020

Epilepsy & Behavior

View full text Add to dashboard Cite

The objectives of the study were to (1) map questions in epilepsy-specific patient-reported outcome measures (PROMs) of children's health-related quality of life (HRQoL) to a proposed core outcome set (COS) for childhood epilepsy research and (2) gain insight into the acceptability of two leading candidate PROMs. Method: We identified 11 epilepsy-specific PROMs of children's HRQoL (17 questionnaire versions) in a previous systematic review. Each item from the PROMs was mapped to 38 discrete outcomes across 10 domains of the COS: seizures, sleep, social functioning, mental health, cognition, physical functioning, behavior, adverse events, family life, and global quality of life. We consulted with three children with epilepsy and six parents of children with epilepsy in Patient Public Involvement and Engagement (PPIE) work to gain an understanding of the acceptability of the two leading PROMs from our review of measurement properties: Quality of Life in Childhood Epilepsy (QOLCE-55) and Health-Related Quality of Life Measure for Children with Epilepsy (CHEQOL). Results: Social Functioning is covered by all PROMs except DISABKIDS and G-QOLCE and Mental Health is covered by all PROMs except G-QOLCE and Hague Restrictions in Childhood Epilepsy Scale (HARCES). Only two PROMs (Epilepsy and Learning Disability Quality of Life (ELDQOL) and Glasgow Epilepsy Outcome Scale (GEOS-YP)) have items that cover the Seizure domain. The QOLCE-55 includes items that cover the domains of Physical Functioning, Social Functioning, Behavior, Mental Health, and Cognition. The CHEQOL parent and child versions cover the same domains as QOLCE-55 except for Physical Functioning and Behavior, and the child version has one item that covers the discrete outcome of Overall Quality of Life and one item that covers the discrete outcome of Relationship with parents and siblings. The QOLCE-55 parent version was acceptable to the parents we consulted with, and CHEQOL parent and child versions were described as acceptable to our child and parent advisory panel members. Significance: Mapping items from existing epilepsy-specific PROMs for children is an important step in operationalizing our COS for childhood epilepsy research, alongside evaluation of their measurement properties. Two leading PROMS, QOLCE-55 and CHEQOL, cover a wide range of domains from our COS and would likely be used in conjunction with assessment tools selected for specific study objectives. The PPIE work provided practical insights into the administration and acceptability of candidate PROMs in appropriate context. We promote our COS as a framework for selecting outcomes and PROMs for future childhood epilepsy evaluative research.

show abstract

Low-dose intranasal insulin improves cognitive function and suppresses the development of epilepsy

et al. 2020

View full text Add to dashboard Cite

Development and assessment of the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE‐16)

Cited by 31 publications

References 30 publications

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

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

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

Low-dose intranasal insulin improves cognitive function and suppresses the development of epilepsy

Contact Info

Product

Resources

About