The development of a preference based paediatric health related quality of life measure for use in economic evaluation.

Use of economic evaluation to aid decision making is widespread and has increased in the UK especially since the introduction of the National Institute for Health and Clinical Excellence (NICE). Cost utility analysis, a form of economic evaluation, allows comparison of interventions within and between disease areas by using outcome measures that combine length and quality of life into a single summary measure, conventionally the quality adjusted life year (QALY). Generic preference based health related quality of life (HRQoL) measures have been developed for adults for this purpose, but research in paediatric populations is more limited. A review of the literature of generic paediatric quality of life measures showed that no preference based measure existed which used children to develop the descriptive system. There was also very little methodological guidance on key issues in the development of new measures and no evidence was found on whether children share similar HRQoL frameworks across age. This thesis presents work which has developed a new preference based paediatric HRQoL measure designed for use in economic evaluation. The descriptive system was developed from interviews with over 70 children in order to determine what dimensions of HRQoL were included. These were then used as the basis for developing the descriptive system by undertaking further analysis and empirical fieldwork with children. This descriptive system was piloted with children with schools and hospital and the results used to refine the descriptive system to be suitable for valuation. Preference weights were obtained by valuing a sample of health states with the UK general population and then modelling to obtain values for all the health states defined by the descriptive system. The results demonstrated that it is feasible to value this descriptive system and the new measure is starting to be used in health care evaluation studies worldwide.