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Health-related quality of life in childhood epilepsy: the results of children's participation in identifying the components

Published online by Cambridge University Press:  01 August 1999

Gabriel M Ronen ,
Peter Rosenbaum ,
Mary Law  and
David L Streiner
Gabriel M Ronen
Affiliation:
Department of Pediatrics, McMaster University, Ontario, Canada
Peter Rosenbaum
Affiliation:
Department of Pediatrics, McMaster University, Ontario, Canada
Mary Law
Affiliation:
School of Rehabilitation Science, McMaster University, Ontario, Canada
David L Streiner
Affiliation:
Department of Clinical Epidemiology, McMaster University, Ontario, Canada
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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.

Type
Original Articles
Information
Developmental Medicine and Child Neurology , Volume 41 , Issue 8 , August 1999 , pp. 554 - 559
Copyright
© 1999 Mac Keith Press

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