Parent- and patient-validated content for pediatric epilepsy quality-of-life assessment

Purpose: The purpose of this study was to assess the parent- and patient-va lidated content of quality-of-life measurement for use in children with epi lepsy. Methods: We asked the parents of 80 consecutive children and adolescents wi th epilepsy to list in order of importance their concerns about living with or caring for their children with epilepsy. Patients were 3 months to 18 y ears of age (mean, 10 years) and identified at the outpatient clinic or dur ing hospital stay. To minimize investigator bias, parents and children list ed their concerns in a private setting without staff involvement. Results: Twenty-six distinct domains were generated by the parents and chil dren. Concerns listed by more than 20 of parents included medication advers e effects (58), cognitive effects of epilepsy (46), prospects for the futur e (41), safety (35), independence (31), and brain damage caused by seizures (30). Concerns ranked by parents as most important included safety (18), b rain damage from seizures (12), enigma of epilepsy (12), cognitive effects of epilepsy (11), and prospects for the future (10). Concerns listed by mor e than 20 of children included social problems (35), cognitive effects of e pilepsy (29), driving (29), sports (27), medication adverse effects (25), a nd schooling (21). Concerns ranked by children as most important included i ssues related to medication adverse effects (13), cognitive effects of epil epsy (10), hatred of epilepsy (8), social embarrassment (6), fear of seizur es (6), injury (6), and dislike of hospital visits (6). Conclusion: The effect of epilepsy on health-related quality of life in ped iatric patients is defined by a limited number of domains. A 20-item invent ory was chosen from the 26 domains generated by the parents and children. O ur study provides insight into parents' and children's perception of seizur es and the impact of epilepsy on everyday life.