Measurement of health status and quality of life in neonatal follow-up studies.

Mortality and neuro-developmental outcome can be precisely measured but in order to interpret the significance of changes in them, further information is needed about health status, the effect of health status on lifestyle of survivors and their families, the quality of life experienced by survivors and the value placed by the public and survivors on different health states. The ability to measure such aspects of health now allows more relevant follow-up studies to be designed. This article discusses concepts of health status and quality of life and the problems in applying these to children. There follows a critique of modern instruments for measuring health status and quality of life and their application in neonatal follow-up studies. We recommend that only a small number of well-established instruments should be considered so that results are valid and can be compared with other studies. Copyright 2000 Harcourt Publishers Ltd.