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

Macran, S, Birks, Y, Parsons, J, Sloper, P, Hardman, G, Kind, P, Doorn, C, Thompson, D and Lewin, R (2006) The development of a new measure of quality of life for children with congenital cardiac disease. Cardiology in the Young. pp. 165-172. ISSN 1047-9511

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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.

Item Type: Article
Copyright, Publisher and Additional Information: Copyright © 2006 Cambridge University Press. This paper will be freely available from March 2007.
Keywords: ill/disabled children, research methodologies
Academic Units: The University of York > Social Policy Research Unit (York)
The University of York > Health Sciences (York)
Depositing User: Repository Officer
Date Deposited: 22 Nov 2006
Last Modified: 17 Oct 2013 14:19
Published Version: http://dx.doi.org/10.1017/S1047951106000102
Status: Published
Refereed: Yes
Related URLs:
URI: http://eprints.whiterose.ac.uk/id/eprint/1743

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