Translation and linguistic validation of a disease-specific quality of life measure for cystic fibrosis.

OBJECTIVE To develop a conceptually and semantically valid English version of a French disease-specific measure of quality of life for children, adolescents, and adults with cystic fibrosis (CF). METHODS Following a backward and forward translation of the measure, 60 participants, including 20 children, 20 parents, and 20 adolescents/young adults completed the Cystic Fibrosis Questionnaire (CFQ) and a series of cognitive probes evaluating their understanding of the items and response choices. RESULTS Semantic and conceptual problems with the items were identified and modified for the second set of cognitive interviews. Response distributions across items and ages were adequate, and the predicted associations between disease severity and quality of life were obtained. CONCLUSIONS The English version of the CFQ appears to be a linguistically valid measure of quality of life for patients with CF. A national validation study is now under way to test the psychometric properties of the measure.