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[Cystic fibrosis as seen from the patients' perspective]
Astrid K Wahl1, Tone Rustøen, Eva Gjengedal
1Avdeling for sykepleierutdanning Høgskolen i Oslo. astrid.wahl@su.hio.no
Background:
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.
Material And Methods:
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.
Results:
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.
Interpretation:
It is possible to experience life as good even though one is living with a life-threatening disease such as cystic fibrosis.