Validation of a new quality of life measure for children with epilepsy

Purpose: There is no adequate measure of health-related quality of life (HR QOL) specifically for children with epilepsy, The aim of this study was to develop an epilepsy-specific HRQOL questionnaire for children, covering fiv e domains: physical function, emotional well-bring, cognitive function, soc ial 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 correla ted more highly with theoretically similar scales on established, generic h ealth measures than with theoretically dissimilar scales (construct validit y). The sensitivity of the questionnaire to differences in epilepsy severit y also was demonstrated. As seizure severity increased, HRQOL subscale scor es decreased, independent of age, gender, age of seizure onset, and IQ, Fur ther, there was a negative relation between the number of antiepileptic med ications taken and measures of memory and language performance, which was i ndependent 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.