Validity and clinical relevance of 2 new quality-of-life instruments for children and adults with epilepsy

Ann M E Bye*, Mark Sabaz, Frank Gilliam, Paul Courter

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

1 Citation (Scopus)


This article summarizes 2 presentations made at a Special Interest Group session ("Quality of Life and Outcomes: New QOL Instruments for Children and Adults with Epilepsy") of the 56th Annual American Epilepsy Society meeting. One presenter described his group's recent evaluation of the content validity of various health-related quality-of-life (HRQOL) measures and the subsequent development of a 20-item patient-oriented outcomes assessment tool called the Epilepsy Foundation of America (EFA) Concerns Index. The EFA Concerns Index has now been validated as an accurate gauge of patient-oriented concerns and it has recently been compared with other HRQOL instruments to document postsurgical improvement. The other presenters described their efforts in developing and validating an HRQOL that was specific to the pediatric epilepsy population. The psychometric properties and the clinical sensitivity of this new instrument, called the Quality of Life in Childhood Epilepsy Questionnaire, have now been validated in the Australian population and the American validation has been published in abstract form. The instrument has also been used to show that the presence of intellectual deficit independently depresses HRQOL outcomes and that there are syndrome-specific effects of epilepsy on quality of life. As these and similarly improved tools for measuring quality of life in epilepsy are developed, validated, and then applied in clinical research, the clinician's ability to determine which interventions provide the best range of outcomes will improve.

Original languageEnglish
Pages (from-to)S684-S690
Number of pages7
JournalAdvanced Studies in Medicine
Issue number7B
Publication statusPublished - 1 Jul 2003
Externally publishedYes


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