Health-related quality of life in survivors of tumours of the central nervous system in childhood - a preference-based approach to measurement in a cross-sectional study

There is an evident need to measure the comprehensive burden of morbidity e xperienced by survivors of brain tumours in childhood. To this end, a quest ionnaire based on the Health Utilities Index mark 2 (HUI2) and mark 3 (HUI3 ) systems was completed independently for a cohort of such children by thei r parents, by a nurse, by physicians and by a selected group of the childre n themselves. Each of the HUI2 and HUI3 systems consists of a multi-attribu te health status classification scheme Linked to a preference function whic h provides utility scores for levels within single attributes (domains of h ealth) and for global health states. All eligible families (n = 44) partici pated. Even cognitively impaired children of at least 9.5 years of age coul d complete the questionnaire. The greatest burden of morbidity, occurring i n two-thirds of children, was in the attribute of cognition. Surprisingly, almost one-third of children experienced pain. Global health status was low est in children who underwent radiotherapy before the age of 5 years and th e corresponding utility scores were related inversely to the volume irradia ted. Children with demonstrable disease had lower scores than those in whom disease was not evident. There was a high level of agreement (intraclass c orrelation coefficients >0.5) on formal assessment of inter-rater reliabili ty for global health-related quality of life utility scores. The usefulness of measures of health status and health-related quality of life, in childr en surviving brain tumours, has been demonstrated by this study. (C) 1999 E lsevier Science Ltd. All rights reserved.