• Validation;
  • Refractory epilepsy;
  • Quality of life;
  • Questionnaire;
  • Children

Summary: 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.