Validity and reliability of the Chinese parent proxy and child self-report health related quality of life measure for children with epilepsy (CHEQOL-25) in Malaysia

Objective: To determine the validity and reliability of the Chinese parent proxy and child self-report health related quality of life measure for children with epilepsy (CHEQOL-25) in Malaysia. Methods: Face and content validity of the Chinese parent proxy and child self-report CHEQOL-25 was verified by an expert panel, and piloted in five children with epilepsy (CWE). The Chinese CHEQOL-25 was then administered to 40 parent proxies and their CWE (aged 8-18 years), from two tertiary hospitals, at baseline and 2 weeks later. Results: Forty parents and their CWE were recruited. Cronbach's alpha for each subscale ranged from 0.56-0.83. At test-retest, the interclass correlation for all items ranged from 0.68-0.97. Items 8 and 25 were removed as their corrected item-total correlation values were <0.3. Epilepsy severity, the number of anti-epileptic drugs taken daily, number of close friends and number of time spent with friends were found to be associated with the parent proxy CHEQOL-25 score. Duration of epilepsy, child's cognitive ability, number of close friends and number of time spent with friends were associated with child self-report CHEQOL-25. The parent proxy and the child self-report showed high to fair agreement on the "interpersonal/social" [Intraclass correlation coefficient (ICC)= 0.670, p<0.001] and "epilepsy secrecy" subscale (ICC=0.417, p=0.048). Conclusions: Our small study found that the Chinese CHEQOL-25 was a valid and reliable questionnaire to assess the quality of life of children with epilepsy from the parent prospective and child self-report when items 8 and 25 were removed.