Monitoring quality of life in outpatients with cystic fibrosis: Feasibility and longitudinal results

Background: To investigate the feasibility of monitoring quality of life (QL) with cystic fibrosis (CF) in a clinical setting, to explore changes in subjective health and to describe the impact of multiple medical and psychosocial factors on the patients' QL. Methods: 108 adolescent and adult outpatients (age 15-47years, FEV1 20-125% of the predicted) answered the Questions on Life Satisfaction repeatedly parallel to each pulmonary function test (2-16 assessments per patient within 18 months). Multiple regression analysis determined the contribution of medical and psychosocial factors to the patients' QL. Results: Good acceptance of the instrument was observed. The completion time was between 5 and 29 min per assessment (median 11 min). QL remained quite stable (r(tt)=.69) with the previous QL score predicting most of the variance of the present score. Additionally, a longer interval between assessments, new colonization with Pseudomonas aeruginosa, infection exacerbations, partnership, vocation and living separately from parents significantly predicted QL at the second assessment. Pulmonary function varied independently of QL. Conclusions: Medical factors such as pulmonary exacerbation and social living circumstances have an impact on the QL of patients with CF. Repeated QL assessments in clinical routine are feasible and useful to recognize the individual patient's adaptation to the disease. (C) 2006 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.