Common content between quality of life questionnaires for children with cystic fibrosis and the International Classification of Functionality, Disability and Health

Abstract

Objective: To identify the most common quality of life instruments for children with cystic fibrosis and link the content with the International Classification of Functioning, Disability and Health (ICF). Methods: The study was conducted in 2 stages. The first stage involved a review of the literature to select quality of life questionnaires. In the second stage 2 independent reviewers identified questionnaire items and categories corresponding to the ICF, according to approved methodology. The degree of agreement was calculated using the kappa coefficient. Results: Two questionnaires were selected: the Cystic Fibrosis Questionnaire and DISABKIDS®. A total of 130 concepts were identified from the 112 items. Forty-seven different ICF categories were linked (k>0.62 for all questionnaires), 21 (44.7%) were related to the “body function” domain, 20 (42.6%) to “activity and participation” and 6 (12.8%) to “environmental factors”. Thirteen items (10%) could not be linked because they represent personal factors or are not covered by the ICF. Conclusion: Body functions were the category most linked to the ICF. Environmental factors were poorly described, and no items were related to body structures in any of the instruments.