Cardiology in the Young

Original Article

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

Susan Macran a1, Yvonne Birks a2, Jonathan Parsons a3, Patricia Sloper a4, Geoff Hardman a1, Paul Kind a1, Carin van Doorn a5, David Thompson a6 and Robert Lewin a2c1
a1 Outcomes Research Group, Centre for Health Economics, London, United Kingdom
a2 BHF Care and Education Research Unit, Department of Health Sciences, University of York, London, United Kingdom
a3 The Yorkshire Heart Centre, Leeds General Infirmary, London, United Kingdom
a4 Social Policy Research Unit, University of York, London, United Kingdom
a5 Cardiac Unit, Great Ormond Street Hospital for Children NHS Trust, London, United Kingdom
a6 Chinese University of Hong Kong, Hong Kong

Article author query
macran s   [PubMed][Google Scholar] 
birks y   [PubMed][Google Scholar] 
parsons j   [PubMed][Google Scholar] 
sloper p   [PubMed][Google Scholar] 
hardman g   [PubMed][Google Scholar] 
kind p   [PubMed][Google Scholar] 
van doorn c   [PubMed][Google Scholar] 
thompson d   [PubMed][Google Scholar] 
lewin r   [PubMed][Google Scholar] 


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.

(Accepted November 4 2005)

Key Words: Health outcomes; psychosocial; child; congenital cardiac malformations.

c1 Correspondence to: Prof Robert Lewin, BHF Care and Education Research Unit, Department of Health Sciences, University of York, York, YO10 5DD, UK. Tel: +44 90432 1393; Fax: +44 90432 1382, E-mail: