Self-reported and parent-reported quality of life of children and adolescents with new-onset epilepsy

Purpose: To investigate the self-reported quality of life (QOL) of children and adolescents with new-onset epilepsy and explore parent's perceptions of their child's QOL and the impact of epilepsy on the family. Methods: As part of the Standard and New Antiepileptic Drug (SANAD) trial, 248 children (aged 8-15 years) with new-onset epilepsy and their parents completed batteries of QOL measures. Children completed the KINDL and subscales of the QOLIE-AD-48. Parental questionnaires included the Rutter Parent Scales, Adverse Events Profile, and subscales of the Child Health Questionnaire. Key Findings: Compared with published norms, children with epilepsy had significantly poorer QOL across multiple domains compared with healthy children and children with asthma. Parents, particularly of younger children and those with other long-term health problems, were affected by their child's health or behavior, which affected their emotional well-being and time for their own needs. Significance: Children with new-onset epilepsy, particularly those with comorbid conditions, are at risk of reduced QOL at the time of diagnosis. It is important that children with epilepsy and their families are assessed for psychosocial problems so that early intervention can be undertaken.