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The development of a new measure of quality of life for children with congenital cardiac disease

Published online by Cambridge University Press:  22 March 2006

Susan Macran ,
Yvonne Birks ,
Jonathan Parsons ,
Patricia Sloper ,
Geoff Hardman ,
Paul Kind ,
Carin van Doorn ,
David Thompson  and
Robert Lewin
Susan Macran
Affiliation:
Outcomes Research Group, Centre for Health Economics, London, United Kingdom
Yvonne Birks
Affiliation:
BHF Care and Education Research Unit, Department of Health Sciences, University of York, London, United Kingdom
Jonathan Parsons
Affiliation:
The Yorkshire Heart Centre, Leeds General Infirmary, London, United Kingdom
Patricia Sloper
Affiliation:
Social Policy Research Unit, University of York, London, United Kingdom
Geoff Hardman
Affiliation:
Outcomes Research Group, Centre for Health Economics, London, United Kingdom
Paul Kind
Affiliation:
Outcomes Research Group, Centre for Health Economics, London, United Kingdom
Carin van Doorn
Affiliation:
Cardiac Unit, Great Ormond Street Hospital for Children NHS Trust, London, United Kingdom
David Thompson
Affiliation:
Chinese University of Hong Kong, Hong Kong
Robert Lewin
Affiliation:
BHF Care and Education Research Unit, Department of Health Sciences, University of York, London, United Kingdom
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Abstract

The purpose of the study was to develop a questionnaire measuring health-related R1 quality of life for children and adolescents with congenital heart disease, the ConQol, that would have both clinical and research applications. We describe here the process of construction of a questionnaire, the piloting and the development of a weighted scoring system, and data on the psychometric performance of the measure in a sample of 640 children and young people recruited via 6 regional centres for paediatric cardiology from across the United Kingdom. The ConQol has two versions, one designed for children aged from 8 to 11 years, and the other for young people aged from 12 to 16 years. Initial findings suggest that it is a valid and reliable instrument, is acceptable to respondents, and is simple to administer in both a research and clinical context.

Keywords

Health outcomespsychosocialchildcongenital cardiac malformations
Type
Original Article
Information
Cardiology in the Young , Volume 16 , Issue 2 , April 2006 , pp. 165 - 172
Copyright
© 2006 Cambridge University Press

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