INTRODUCTION: Quality of life (QOL) assessment in cystic fibrosis is as important as the assessment of the patient's health status. However, there are controversies on QOL concepts and theories. METHOD: Eleven Brazilian patients with cystic fibrosis, 18 years or older, answered questions suggested by the World Health Organization to explore the concept of QOL. The grounded theory approach provided the basis for this study and the data were qualitatively analyzed. RESULTS: Although the diversity of domains valued by the participants is in agreement with the multidimensional nature of QOL, there are some domains missing in the scales. CONCLUSIONS: No currently available scale comprises all aspects ranked as important by the patients. This underscores the importance of idiosyncratic and cultural aspects on QOL in cystic fibrosis. Clarifying the relationship between health and QOL still relies on further research.
Rating scales; cystic fibrosis; quality of life; health-related quality of life
