Article

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, 10-14 y;
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.
CI - Copyright (c) 2012 American Congress of Rehabilitation Medicine. Published by
Elsevier Inc. All rights reserved.

Langue : ANGLAIS