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.

Measuring health status: information for primary care decision making.

Primary Care Trusts (PCTs), charged with improving the health of their population, need to measure the extent to which patients actually benefit from the health care that is provided for them. One way of achieving this is to measure health status of patients over time. The study described here reports on the feasibility of administering the EQ-5D in general practitioner (GP) surgeries and identifies how the results might be used by practices and PCTs to improve the health of their populations.