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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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References

Grech V, Savona-Ventura C. Declining mortality from congenital heart disease related to innovations in diagnosis and treatment: a population based study. Cardiol Young 1999; 9: 78–80.Google Scholar
Centre for Human Rights. Convention on the rights of the Child. Geneva: United Nations, 1989.
Verrips G, Vogels A, den Ouden A, Paneth N, Verloove-Vanhorick S. Measuring health-related quality of life in adolescents: agreement between raters and between methods of administration. Child Care Health Dev 2000; 26: 457–469.Google Scholar
Addington-Hall J, Kalra L. Who should measure quality of life? BMJ 2001; 322: 1417–1420.Google Scholar
Moons P, Van Deyk K, Budts W, De Geest S. Caliber of Quality of Life Assessments in Congenital Heart Disease: A Plea for More Conceptual Rigor. Arch Pediatr Adolesc Med 2004; 158: 1062–1069.Google Scholar
Health-related quality of life in children with congenital heart conditions – themes from interviews. 16th Annual Conference of the European Health Psychology Society; 2002; Lisbon, Portugal.
Varni JW, Seid M, Rode CA. The PedsQL-super™: Measurement model for the Pediatric Quality of Life Inventory. Med Care 1999; 37: 126–139.Google Scholar
Uzark K, Jones K, Burwinkle TM, Varni JW. The Pediatric Quality of Life Inventory™ in children with heart disease. Prog Pediatr Cardiol 2003; 18: 141–149.Google Scholar
Warnes CA, Liberthson R, Danielson GK, et al. Bethesda Conference Report. Task Force 1: The Changing Profile of Congenital Heart Disease in Adult Life. J Am Coll Cardiol 2001; 37: 1161–1198.Google Scholar
Macran S, Birks Y, RJ L, Hardman G. The ConQol: a disease specific measure of health-related quality of life for children with congenital heart conditions. BHF Care and Education Research Unit, 2004.Google Scholar
Kamphuis M, Ottenkamp J, Vliegen HW, et al. Health related quality of life and health status in adult survivors with previously operated complex congenital heart disease. Heart 2002; 87: 356–362.Google Scholar