الملخص الإنجليزي
Abstract
Background: Epilepsy is the commonest neurological disorder among children worldwide, that can affected children and their families.Health-related quality of life (HRQOL) measurement has emerged as an important health outcome in clinical trials, clinical practice improvement strategies, and healthcare services research and evaluation. A range of scales is available to measure health-related quality of life. Recently established quality of life scales have been translated for use in a wide range of Western and non-Western cultures. One of the most widely used health-related quality of life scales for use in children is the PedsQL_4.0. In situations where children are unable or unwilling to respond for themselves, measurement of quality of life (QOL) is often obtained by parent proxy-report. Objective: the overall objective was to describe the QOL in Omani children in Sultan Qaboos University hospital living with epilepsy, Identify clinical and social determinants of the QOL in those children and test the agreement between child and parent proxy-reports. Methods: One hundred and one Omani children, age range from 5-18 years (categorized in three groups as 5-7, 8-12, and 13 – 18 years) of either sex have been enrolled over a three months period with established criteria by ILAE classification of epilepsy. Descriptive epidemiology has been used to describe the QOL in these children. QOL was measured by PedsQL_ (4.0) questionnaire; a 23 items, child and parent report questionnaire. Cronbach's alpha coefficients were used to determine the internal consistency of the subscales analysis of variance (ANOVA) were used to compare the mean QOL scores. Agreement between children's and parents' report of quality of life have been tested using Spearman's rho. A multivariate analysis of variance (MANOVA) was undertaken to determine differences in subscale ratings. Results: Cronbach's alpha coefficients for child self-report and parent proxy-reports exceeded 0.79, 0.90 respectively for the total scores, health summary scores and psychological health summary scores. Factors found affecting QOL included; family status, family income level, social security coverage, type of treatment, seizure frequency, age of onset, seizure free duration in years. Consistency between children self-reports and parent proxy-reports on the PedsQLTM were moderate to low. Younger age group, 5-7 years' and females are the most affected group in overall QOL subscale. functioning has been found to 6 Conclusion: Omani children with epilepsy have relatively compromised QOL. Psychosocial functioning has been found to be highly affected suggesting that QOL should be an important outcome measure in management children with epilepsy rather than only seizure control.