What defines a pulmonary exacerbation? The perceptions of adults with cystic fibrosis

Abstract 

Background

There is no standardised definition of a pulmonary exacerbation in cystic fibrosis (CF). In attempting to achieve standardised criteria it is important to identify patient-reported indicators.

Methods

Interviews were undertaken with 47 adults with CF. Participants were asked to report symptoms experienced during a pulmonary exacerbation in two ways: the first symptoms they become aware of, and how they subsequently recognised when they were improving.

Results

A range of systemic and respiratory symptoms were reported. Their relative importance varied by severity of disease. The severity and subsequent improvement of an exacerbation was often described as limitations on their activities.

Conclusion

These preliminary data suggest that patient-reported indicators of a pulmonary exacerbation may not be the same for all adults with CF. Whether different indicators are associated with specific demographic or clinical variables remains to be evaluated.

Keywords: Pulmonary exacerbation, Respiratory symptoms, Patient-reported outcome, Qualitative data