Linking quality-of-life measures using the international classification of functioning, disability and health and the International Classification of Functioning, Disability and Healthychildren and youth version in chronic health conditions: The example of young people with hemophilia

Objective: 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 HealthY 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.