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Titre : | Poor Agreement on Health-Related Quality of Life Between Children With Congenital Hand Differences and Their Parents (2012) |
Auteurs : | M.S. Ardon ; Ruud W. Selles ; M.E. Roebroeck |
Type de document : | Article |
Dans : | Archives of Physical Medicine and Rehabilitation (2012/4, 2012) |
Article en page(s) : | pp 641-646 |
Langues: | Anglais |
Descripteurs : |
HE Vinci Enfant (6-12 ans) ; Qualité de vie ; Rééducation et réadaptation |
Mots-clés: | Child ; Female ; Hand deformities ; congenital ; Male ; Quality of life ; Questionnaires ; Femelle ; Anomalies morphologiques congénitales de la main ; Mâle |
Résumé : |
Objectives 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. Design Survey. Setting University hospital, outpatient clinic. Participants Children with CHD (age range, 1014y; N=106). Interventions Not applicable. Main Outcome Measure 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. |
Disponible en ligne : | Oui |
En ligne : | http://www.archives-pmr.org/article/S0003-9993%2811%2900996-8/abstract |