Content comparison of health-related quality of life measures for cerebral palsy based on the International Classification of Functioning.

Abstract

Content comparison of health-related quality of life (HRQOL) measures is currently important because of the varying use of concepts and operationalisations. Our objective was to use the International Classification of Functioning Children and Youth version (ICF-CY) as a standard by which to compare the content of all cerebral palsy (CP) disease-specific HRQOL measures. MEDLINE and PsycINFO databases were searched up to September 2008. The content of HRQOL measures was linked to the ICF-CY by two trained assessors. Agreement was calculated using kappa (κ) statistic. Four disease-specific HRQOL measures were identified. Three generic measures were selected as a content comparison group. A total of 576 concepts contained in the measures were identified. Eighty-nine percent (n = 510) were linked to 127 different ICF-CY categories. Overall κ agreement was 0.76 (95% CI: 0.75-0.77). Forty percent of concepts were linked to the activity and participation component. The measures varied in the number of concepts and the distribution of concepts by ICF-CY components. The ICF-CY provided an international accepted, structured framework for the content comparison of CP-specific and generic HRQOL measures. The results will provide clinicians and researchers with additional information, useful when selecting HRQOL measures.