Applicability of the health utilities index to a population of childhood survivors of central nervous system tumours in the UK

This paper describes the application of a multi-attribute, preference-linke d health status and health-related quality of life measurement system-the H ealth Utilities Index (developed in Canada)-to a group of subjects in the U .K. Children who had survived tumours of the central nervous system (n = 30 , age 6-16 years) formed the study group. Respondents (children, parents, p hysicians and physiotherapists) found the activity (completion of a 15-item questionnaire) to be acceptable and not burdensome (it was accomplished ea sily by all children greater than or equal to 10 years of age). Instrumenta l reliability was established by acceptable intra- and interobserver agreem ent and construct validity was supported by strong similarities between the results obtained in this study and those reported from a similar group of children in Canada. The greatest burden of morbidity was reported for the a ttributes of emotion and cognition (each affected in >50% of the children). Pain was surprisingly prevalent (affected in approximately one-third of ch ildren). The finding of a large number of unique health states emphasises t he complex morbidity burden experienced by these children who self-reported poorer overall health (as reflected in utility scores) than did the proxy respondents. The information obtained from this study is readily interpreta ble and clinically useful. The results of this study also illustrate that e xtreme caution must be exercised in undertaking linguistic modifications to established instruments for, in this instance, these resulted in a loss of the ability to detect the most severe emotional morbidity and reduced the comparability of results between studies. With this provision, the Health U tilities Index is evidently applicable in the U.K. and the original version has been recommended for use in brain tumour studies by the U.K. CCSG (the U.K. Children's Cancer Study Group). (C) 1999 Elsevier Science Ltd. All ri ghts reserved.