Validation of a new quality of life measure for children with epilepsy
M Sabaz1, D R Cairns, J A Lawson
1School of Paediatrics, University of New South Wales, Kensington, Australia.
Insights
A new health-related quality of life (HRQOL) questionnaire for children with epilepsy was developed and validated. This epilepsy-specific tool reliably measures HRQOL across physical, emotional, cognitive, social, and behavioral domains, proving sensitive to epilepsy severity.
Area of Science:
- Pediatric Neurology
- Quality of Life Research
- Psychometrics
Background:
- Existing health-related quality of life (HRQOL) measures lack specificity for children with epilepsy.
- There is a need for a validated instrument to assess the multifaceted impact of epilepsy on children's well-being.
Purpose of the Study:
- To develop and validate an epilepsy-specific HRQOL questionnaire for children.
- To assess the instrument's reliability, validity, and sensitivity to epilepsy severity.
Main Methods:
- Guardians of children with refractory epilepsy (diagnosed via video-EEG monitoring) completed the new epilepsy-specific HRQOL scale.
- Standard, generic HRQOL measures were also administered for comparison.
Main Results:
- The epilepsy-specific HRQOL questionnaire demonstrated good internal consistency reliability for all scales.
- The instrument showed strong construct validity, correlating highly with theoretically similar generic HRQOL scales.
- HRQOL scores decreased as epilepsy severity increased, confirming the questionnaire's sensitivity.
Conclusions:
- The developed HRQOL instrument is a reliable, valid, and sensitive measure for children with epilepsy.
- This new tool shows potential as an outcome measure for medical or surgical interventions in pediatric epilepsy.
Purpose:
There is no adequate measure of health-related quality of life (HRQOL) specifically for children with epilepsy. The aim of this study was to develop an epilepsy-specific HRQOL questionnaire for children, covering five domains: physical function, emotional well-being, cognitive function, social function, and behavior. Second, we aimed to demonstrate the instrument's reliability and validity, and its sensitivity to differences in epilepsy severity.
Methods:
The subjects were guardians of children with refractory epilepsy, whose syndrome had been defined by using video-EEG monitoring. Each family completed the developed epilepsy-specific HRQOL scale for children and two standard, generic measures of HRQOL.
Results:
The results indicated that each of the scales of the questionnaire had good internal consistency reliability. Furthermore, each scale correlated more highly with theoretically similar scales on established, generic health measures than with theoretically dissimilar scales (construct validity). The sensitivity of the questionnaire to differences in epilepsy severity also was demonstrated. As seizure severity increased, HRQOL subscale scores decreased, independent of age, gender, age of seizure onset, and IQ. Further, there was a negative relation between the number of antiepileptic medications taken and measures of memory and language performance, which was independent of age, gender, age of seizure onset, IQ, and seizure severity.
Conclusions:
This study demonstrated that the developed HRQOL instrument is a reliable and valid measure and is sensitive to differences in epilepsy. These results indicate that this new instrument may be a viable medical or surgical outcome measure for children with epilepsy.
