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Abstract

This study compares the reproducibility, construct validity and responsiveness 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 children with asthma and their parents completed the HAY and daily recorded the child's asthma symptoms in a diary. Additionally 296 age- and -gender matched healthy children and their parents completed the generic part of the HAY. Reproducibility and responsiveness were examined in a sub-group of 80 children with asthma. In this group, three measurements were carried out, at baseline, after one week and once during the following 6 month when the clinical asthma status had changed. The within-subject standard deviations (SD) of three dimensions (physical activities, social activities, self-management) differed significantly (p < 0.05) in favour of the parent-version, indicating that the reproducibility of the parent version was better than that of the child version. The mean score-differences between children with asthma and healthy children as reported by parents did not significantly differ from those reported by children, except for cognitive activities (e.g. be able to concentrate on school work). The mean differences with regard to children with a different actual asthma status (symptom analysis), as reported by both informants, did not differ. Compared to the child-version, the parent-version showed greater ability to detect changes in children's quality of life over time for all but one dimension, indicating better responsiveness. The results indicate that in discriminative studies child and parents reports can be substituted on a group-level. In longitudinal studies data have to be obtained from parents. Consequently, caregivers collecting quality of life data for longitudinal purposes in daily practice should collect these data simply from parents.

Dietary treatment of Crohn’s disease: perceptions of families with children treated by exclusive enteral nutrition, a questionnaire survey

“…This strong agreement between parents and their chronically ill children has been reported before [19]; however, there are strong arguments that both opinions are of vital importance and should be sought jointly [20]. …”

The HEAR-QL: Quality of Life Questionnaire for Children with Hearing Loss

“…While parent and teacher reports are important during functional assessments of children with HL, we were most interested in understanding how children perceived their own QOL. Moreover, research has shown that parents are not necessarily accurate reporters of their child's QOL (Le Coq, 2000; Eiser and Morse, 2001; Jovokic, 2004; Goldbeck and Melches, 2005; Cremeens et al, 2006, Uzark et al, 2008). In addition, self-report is considered the standard for assessing perceived HRQOL, and only if a child is too young, too ill, or cognitively unable to answer the questions should parental proxy be substituted (Varni et al, 2005).…”

Patient satisfaction in pediatric outpatient settings from the parents’ perspective - The Child ZAP: A psychometrically validated standardized questionnaire

“…However, given the fact that more than half of the target population can not be interviewed directly due to their age, this decision appears to be justified. In addition, studies in which self-assessments of children and assessments by their parents are compared show a high correlation between these two measures [39-41]. …”