Health-related quality of life measurement in cystic fibrosis: advances and limitations

Abstract

Health-related quality of life (HRQoL) measurement in cystic fibrosis (CF) allows the inclusion of the patient’s perspective in research and clinical practice. HRQoL scales have been used for many purposes and this review focuses on how HRQoL measurement has been implemented in CF research and care. Specifically, the review considers 1) the instruments used to measure HRQoL, 2) the factors that influence how people report HRQoL, 3) the monitoring of HRQoL in clinical practice, 4) HRQoL as an outcome measure in interventions and clinical trials and 5) whether HRQoL can predict survival. The challenge for the future is to use the available information to develop and evaluate psychological interventions that would be expected to improve HRQoL in children and adults with CF.