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

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. Survey. University hospital, outpatient clinic. Children with CHD (age range, 10-14 y; N=106). Not applicable. 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. 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. 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.

Ardon MS ，Selles RW ，Roebroeck ME ，Hovius SE ，Stam HJ ，Janssen WG ... -  《-》

Low impact of congenital hand differences on health-related quality of life.

To evaluate health-related quality of life (HRQoL) and its determinants in children with congenital hand differences (CHDs). Survey. Outpatient clinic of a university hospital. Children (N=116; age range, 10-14 y) with CHDs. Not applicable. HRQoL evaluated by child self-reports of the Pediatric Quality of Life Inventory and compared with reference values of healthy peers. Multivariable regression analysis was performed to investigate determinants of HRQoL. All children with CHDs had scores similar to those of healthy peers, except for a lower score on social functioning in children aged 13 to 14 years. Higher ease of activity performance was related to higher HRQoL scores, and presence of comorbidity was related to lower scores on all HRQoL subdomains except for school functioning. Additionally, physical health was influenced by ethnicity, bilateral involvement, and previous surgery; emotional functioning by the number of affected digits; school functioning by age; and total HRQoL by bilateral involvement. Children with CHDs report similar HRQoL as healthy peers. HRQoL decreased in the presence of comorbidity but increased with higher ease of activity performance. Scores on some subdomains were improved by the number of affected digits, but were reduced by age, ethnicity, bilateral involvement, and surgery. Although HRQoL is an important health outcome, it may not be sensitive to detect changes over time or changes after treatment in children with CHDs.

Ardon MS ，Janssen WG ，Hovius SE ，Stam HJ ，Selles RW ... -  《-》

Agreement between children with cancer and their parents in reporting the child's health-related quality of life during a stay at the hospital and at home.

Speyer E ，Herbinet A ，Vuillemin A ，Chastagner P ，Briançon S ... -  《-》

Health-related quality of life in children and adolescents who have a diagnosis of attention-deficit/hyperactivity disorder.

Klassen AF ，Miller A ，Fine S 《-》

Determinants of child-parent agreement in quality-of-life reports: a European study of children with cerebral palsy.

White-Koning M ，Arnaud C ，Dickinson HO ，Thyen U ，Beckung E ，Fauconnier J ，McManus V ，Michelsen SI ，Parkes J ，Parkinson K ，Schirripa G ，Colver A ... -  《-》