Article

This study aimed to measure the health and functioning of children
with hemophilia in Europe using the International Classification of Functioning,
Disability and Health (ICF) and the International Classification of Functioning,
Disability and Health-Children and Youth Version (ICF-CY)
as a frame of reference
and items from health-related quality-of-life instruments as a measurement tool
within a European data set. DESIGN: Based on the results of linkage of items from
the hemophilia-specific health-related quality-of-life questionnaire for children
and adolescents to ICF/ICF-CY, the categories most relevant for the description
of health and functioning of children with hemophilia were identified for each
domain of the ICF/ICF-CY. Using data from the European Study of Clinical, Health,
Economic, and Quality-of-Life Outcomes of Hemophilia treatment on 446 children,
the frequency of impairments in body structures and body functions, restrictions
in activities and participation, and barriers in contextual factors were calculated. RESULTS: In general, the frequency of impairments, restrictions, and
barriers was low in the studied population of children with hemophilia. However,
the level of restriction as well as barriers was higher than the level of
impairments. Older children, children receiving on-demand treatment, and children
with severe hemophilia tended to have more problems compared with younger
children, children receiving prophylaxis treatment, and children with mild to
moderate hemophilia. CONCLUSIONS: Using items from quality-of-life instruments
with the ICF-CY as a frame of reference proved to be a useful approach for the
assessment of health and functioning in children with hemophilia.

Langue : ANGLAIS