A review of subjective impact measures for use with children and adolescents with epilepsy

Purpose: To evaluate measures of epilepsy-specific impact currently available for use with children and adolescents. The relative merits of the different measures are examined. Method: Four published epilepsy-specific impact measures, the Epilepsy and Learning Disabilities Quality of Life Scale (ELDQOL), the Health-related Quality of Life in Children with Epilepsy (HRQoLCE); the Impact of Childhood Neurologic Disability Scale (ICND), the Quality of Life in Epilepsy Inventory for Adolescents (QOLIE-AD-48), and the Quality of Life for Children with Epilepsy (QOLCE) were reviewed. Results: There exist several shortcomings with the available measures on various psychometric criteria with not one of the currently available measures reaching acceptable psychometric standards in terms of reliability and validity. Of note are the particular inadequacies in the validation of scale content; with there being no investigation of the existence of age or ability effects for the items in any of the questionnaires reviewed. Conclusion: There is a clear demand for a psychometrically robust measure of subjective impact of epilepsy for children and adolescents, which is applicable to a wide age and ability range. At present, the efforts of the Canadian Pediatric Epilepsy Network with the recent publication of a novel measure holds much promise for the future. It is advocated that further efforts are made to further establish the psychometric properties of these scales and for their integration within a comprehensive outcome model for use in the evaluation of clinical interventions.