Cystic fibrosis as seen from the patients' perspective

We present the results of a study of adults with cystic fibrosis, with an emphasis on their experience of symptoms and treatment, future prospects, and quality of life. 86 adults (above the age of 18) with cystic fibrosis, recruited through the Norwegian Centre for Cystic Fibrosis. The response rate was 84%; average age of respondents 29; 48% were women. The most frequently reported symptoms were coughing, phlegm and fatigue. 26% experienced great difficulties living with cystic fibrosis. 75% were satisfied with their life and 71% had a positive outlook for the future. Lung function was the variable most strongly related to symptoms, treatment and outlook for the future. It is possible to experience life as good even though one is living with a life-threatening disease such as cystic fibrosis.