Poor Agreement on Health-Related Quality of Life Between Children With Congenital Hand Differences and Their Parents

Ardon MS, Selles RW, Roebroeck ME, Hovius SE, Stam HJ, Janssen WG. Poor agreement on health-related quality of life between children with congenital hand differences and their parents.ObjectivesTo 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.DesignSurvey.SettingUniversity hospital, outpatient clinic.ParticipantsChildren with CHD (age range, 10–14y; N=106).InterventionsNot applicable.Main Outcome MeasureAgreement 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.ResultsOn 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.ConclusionsIn 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.