title: Health-related quality of life in childhood epilepsy: the results of children's participation in identifying the components.
abstract: Separate groups of children with epilepsy, recruited from a regional pediatric epilepsy database, and their parents were established to discuss their life with epilepsy. Twenty-nine children (aged between 6 years and 10 years 4 months) and 42 of their parents were placed into nine and 17 groups respectively. The participants provided information about their own perceptions of life with epilepsy. Discussions were taped and textual analysis followed to extract, understand, explain, and categorize the health-related quality of life (HRQL) components. The process enabled us to identify the burdens and concerns of children with epilepsy, and to identify five emerging dimensions: (1) the experience of epilepsy, (2) life fulfillment and time use, (3) social issues, (4) impact of epilepsy, and (5) attribution. Identifying and understanding the components of HRQL is crucial for developing an HRQL scale in childhood epilepsy. In addition, this list of elements can help health professionals improve their services by considering and addressing aspects of the epilepsy experience beyond the traditional issues for children with epilepsy and their families.
authors.affiliation: Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada. roneng@fhs.mcmaster.ca
authors.forename: G M
authors.initials: GM
authors.lastname: Ronen
authors.forename: P
authors.initials: P
authors.lastname: Rosenbaum
authors.forename: M
authors.initials: M
authors.lastname: Law
authors.forename: D L
authors.initials: DL
authors.lastname: Streiner
mesh_terms: D001294:Attitude to Health; D002648:Child; D002669:Child Welfare; D003710:Demography; D004827:Epilepsy / Q000523:psychology*; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D011788:Quality of Life; D011795:Surveys and Questionnaires