The development of a new measure of quality of life for children with congenital cardiac disease.
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.
Macran
Susan
S
Outcomes Research Group, Centre for Health Economics, United Kingdom.
Birks
Yvonne
Y
Parsons
Jonathan
J
Sloper
Patricia
P
Hardman
Geoff
G
Kind
Paul
P
van Doorn
Carin
C
Thompson
David
D
Lewin
Robert
R
D000293:Adolescent; D000294:Adolescent Behavior / Q000523:psychology; D002648:Child; D002652:Child Behavior / Q000523:psychology; D005260:Female; D006330:Heart Defects, Congenital / Q000523:psychology*; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D010865:Pilot Projects; D011594:Psychometrics / Q000295:instrumentation*; D011788:Quality of Life / Q000523:psychology*; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires; D006113:United Kingdom