MEASURING HEALTH-RELATED QUALITY-OF-LIFE IN CHILDREN - THE DEVELOPMENT OF THE TACQOL PARENT FORM

Health-related quality of life (HRQoL), conceptualized as patients' ow n evaluations of their health status, is an important criterion in eva luating health and health care and in the treatment of individual pati ents. Until now, few systematic attempts have been made to develop ins truments to assess the HRQoL of children using such a conceptualizatio n. This article describes the conceptualization and results of a study aiming to develop such an instrument for children aged 6-15 years usi ng their parents as a proxy. The feasibility and psychometric performa nce of the instrument were evaluated in a study of 77 patients of the paediatric out-patient clinic of Leiden University Hospital. For each of the a priori-defined domains, a parent form scale could be construc ted with satisfactory reliability and moderate correlations with the o ther scales. Only some of the parents indicating health status problem s also signalled negative reactions to these problems. This is, in our view, a strong argument for the distinction between health status and quality of life (QoL). The correlation coefficients between the paren t form and a children's questionnaire were low. Overall, the psychomet ric performance of the TACQOL parent form looks promising, which sugge sts that this instrument - with some modifications - can indeed be use d to assess group differences in HRQoL in children. The results, howev er, should be replicated in larger samples, currently under study. The relation between parents' proxy reports on the HRQoL of their childre n and children's self-reports needs further investigation. Qual. Life Res. 7:457-465 (C) 1998 Kluwer Academic Publishers