Novel Self-Reporting and Proxy Responses with Validated Health-Related Quality of Life (HRQL) Measures for Children with Epilepsy.
Abstract number :
K.01
Submission category :
Year :
2001
Submission ID :
120
Source :
www.aesnet.org
Presentation date :
12/1/2001 12:00:00 AM
Published date :
Dec 1, 2001, 06:00 AM
Authors :
G.M. Ronen, MD,FRCPC MSc, Pediatrics, McMaster University, Hamilton, ON, Canada; P.L. Rosenbaum, MD, FRCPC, Pediatrics, McMaster University, Hamilton, ON, Canada; D.L. Streiner, PhD, Psychiatry, University of Toronto, Toronto, ON, Canada
RATIONALE: Outcome and HRQL measures include patients[ssquote] values, preferences and perceptions of their symptoms and function. Adult HRQL measures are generally inappropriate for children. Therefore we have developed and validated two HRQL measures for children with epilepsy: A self-reporting scale for the children and a proxy response scale for the parents.
METHODS: Qualitative and quantitative research methodologies were used sequentially. Items and domains for both scales were identified through separate modified focus groups of children with epilepsy and their parents (Dev Med Child Neurol, 1999; 41:554). Judgmental item reduction using researcher triangulation reduced the initial items from 93 to 67. A self-reporting scale, phrased in the children[ssquote]s own words was created in a forced-choice format. Children with active epilepsy across Canada, ages 6-15 years, who functioned at least at a normal grade one level, and their parents were asked to complete the questionnaire and a demographic data form.
RESULTS: 400 children with active epilepsy and their parents, understood and separately answered the questionnaire. Parents were asked to answer the questionnaire the way they thought their children would have responded. Factor analysis of the children[ssquote]s responses identified five clinically relevant factors:
1. Interpersonal social consequences
2. Worries and concerns
3. Emotional/intrapersonal issues
4. Epilepsy our secret
5. Quest for normality
Each factor contains five items. Factor analysis of the parents[ssquote] responses identified only the first four factors. Items correlated with those of the children except in factor 2 where the parents felt their children were more concerned about the future than the children actually appear to be. We added to the parents[ssquote] questionnaire 5 items on future concerns and deleted the items of factor 5. Internal consistency, test-retest reliability and construct validity testing showed the scales to be reliable and valid.
CONCLUSIONS: The format of the scales is user-friendly, and reduces the tendency for socially desirable responses and for cognitive burdens. These scales will be useful to describe HRQL and to assess the impacts of interventions for this population of children.
Support: The Medical Research Council of Canada in partnership with Glaxo-Wellcome.