Abstracts

RATIONALE: It is clearly recognised that quality of life of children with epilepsy is a critical aspect to management yet there are few instruments available to measure it. The Quality of Life in Childhood Epilepsy Questionnaire (QOLCE) was developed and validated in an Australian population for this purpose (1). The aim of this study was to adapt and validate the QOLCE for use in the American population and to compare the quality of life of both American and Australian childhood epilepsy patients using this instrument.
METHODS: The subjects were parents of children with epilepsy. Each family received a quality of life package by post. This included the QOLCE and the Child Health Questionnaire (CHQ). Higher scores on both instruments reflected higher levels of functioning. The QOLCE was adapted from Australian English to American English. Clinical data collected about each patient included: rating of seizure severity; number of AEDs taken; and age of epilepsy onset. To establish reliability of the QOLCE, internal consistency reliability was established for each of the subscales. Construct validity of each QOLCE subscale was established by correlating the QOLCE subscales with similar CHQ subscales. Clinical sensitivity was established by correlating QOLCE subscale and total scores with seizure severity, number of AEDs taken and age of epilepsy onset. Finally, QOLCE scores from Australian children with epilepsy (data collected from a previous investigation) (1) was compared to QOLCE scores from American children with epilepsy.
RESULTS: Seventy-one (89% response rate) subjects returned the questionnaire package (45 boys, 26 girls with epilepsy). The age of the children ranged from 4 to 18 years inclusive (mean =11.17, SD=4.08) with a mean age of onset of 5.13 years (SD=3.72). Seizures were classified as severe to very severe (n=20), moderately severe (21), mild to very mild (16), and 12 children did not experience seizures during the past 6 months. The number of AEDs taken ranged from zero to five (mean=1.90, SD=1.01). The internal consistency reliabilities of the subscales ranged from 0.72 to 0.97. Quality of Life in Childhood Epilepsy subscales correlated moderately highly with similar CHQ subscales (0.46 to 0.70). Twelve of 16 QOLCE subscales and the total QOLCE quality of life score had a significant negative relationship with a rating of seizure severity (p[lt]0.05). The number of AEDs taken negatively correlated with only one QOLCE subscale. Age of epilepsy onset postively correlated with three QOLCE subscales. When comparing the QOLCE subscale scores for both Australian and American children with epilepsy, no significant differences were found.
CONCLUSIONS: This study demonstrated that the adapted QOLCE is a valid instrument for American children. It was shown to have excellent levels of internal consistency, construct validity and clinical sensitivity. Showing the QOLCE can be adapted and validated for another cultural centre extends its value as a useful instrument. There is potential application to other cultural settings, establishing it as a tool able to be used in cross cultural research.
1. Sabaz M, Cairns DR, Lawson JA, Nheu N, Bleasel AF, Bye AME. Validation of a new quality of life measure for children with epilepsy. Epilepsia 2000;41:765-74.
[Supported by: National Health and Medical Research Council (Australia) (grant number 209512).]