Which source should we use to measure quality of life in children with asthma: The children themselves or their parents?

This study compares the reproducibility, construct validity and responsiven ess of self-report and parent-report quality of life questionnaires How Are You (HAY) for 8-12-year-old children with asthma. A total of 228 Dutch chi ldren with asthma and their parents completed the HAY and daily recorded th e child's asthma symptoms in a diary. Additionally 296 age- and -gender mat ched healthy children and their parents completed the generic part of the H AY. Reproducibility and responsiveness were examined in a sub-group of 80 c hildren with asthma. In this group, three measurements were carried out, at baseline, after one week and once during the following 6 month when the cl inical asthma status had changed. The within-subject standard deviations (S D) of three dimensions (physical activities, social activities, self-manage ment) differed significantly (p < 0.05) in favour of the parent-version, in dicating that the reproducibility of the parent version was better than tha t of the child version. The mean score-differences between children with as thma and healthy children as reported by parents did not significantly diff er from those reported by children, except for cognitive activities (e.g. b e able to concentrate on school work). The mean differences with regard to children with a different actual asthma status (symptom analysis), as repor ted by both informants, did not differ. Compared to the child-version, the parent-version showed greater ability to detect changes in children's quali ty of life over time for all but one dimension, indicating better responsiv eness. The results indicate that in discriminative studies child and parent s reports can be substituted on a group-level. In longitudinal studies data have to be obtained from parents. Consequently, caregivers collecting qual ity of life data for longitudinal purposes in daily practice should collect these data simply from parents.