Poor agreement on health-related quality of life between children with congenital hand differences and their parents.

Objective: To determine agreement between children with congenital hand differences (CHDs) and their parents on health-related quality of life (HRQOL) and to explore whether characteristic variables were associated with this agreement on different domains of HRQOL.

Methods: Survey. Methods: University hospital, outpatient clinic. Methods: Children with CHD (age range, 10-14 y; N=106). Methods: Not applicable. Methods: Agreement on HRQOL was determined by comparing child self-reports and parent proxy-reports of the Pediatric Quality of Life Inventory 4.0 generic core scales, in Dutch. Agreement was examined both at group level and individual level.

Results: On a group level, children scored the same as their parents on a scale of 0 to 100 (physical health, 89.1±14.1 vs 88.0±15.6; psychosocial health, 80.6±13.4 vs 79.0±14.5; and total HRQOL, 83.5±12.3 vs 82.0±13.6). On an individual level, however, scoring was subject to high variation, with children reporting both higher and lower scores than their parent proxy. There were no major determinants for agreement; we only found that agreement was higher on emotional functioning in children with more affected fingers and on social functioning in bilaterally involved children.

Conclusions: In terms of mean group scores, 10- to 14-year-old children with CHD agree with their parents or proxy on the child's HRQOL. However, on an individual level, they disagree; on some subdomains limits of agreement are as large as 30 points on the 0 to 100 scale. Therefore, care should be taken in cases where children are unable to complete the questionnaire in choosing the parents' score as a representative substitute for the child's score.