The language COPD patients use to describe exacerbations: findings from an interview study

Introduction: Exacerbations of chronic obstructive pulmonary disease (COPD) are significant events. Patients’ (and their carers') experiences and understandings of these events affect their responses to symptom changes and the likelihood of reporting such episodes. We aimed to explore the language used by COPD patients and their carers to describe exacerbations, and to understand the meaning and relevance of the term ‘exacerbation’ to them. Methods: Semi-structured interviews were conducted by phone in a multicentre qualitative study. Participants were recruited purposively in primary and secondary care. Interviews were audio-recorded and analysed using reflexive thematic analysis. Descriptive data are presented as mean [SD] unless stated. Results: 40 COPD patients were interviewed (21 female; 28 white; age 69 [8.1] years, COPD duration 11.3 [8.3] years, median [range] number of exacerbations in the past year 1.5 [0-9]). Seven carers (6 female, 6 white) were interviewed. Two themes were identified: 1) The language we use in COPD is important and 2) Episodes of symptom worsening have profound impact. Participants found the word exacerbation difficult to say, sometimes using the words exasperation or expiration instead. Very few reported using the word exacerbation themselves and half stated that the word means nothing at all to them. Instead most people used plain language like ‘me breathing’s just worse’ or ‘I’m having a job to breathe’ to describe exacerbations. Flare-up was a commonly used term, with some saying they had an ‘attack’, however none used the words ‘worsening’ or ‘crisis’ to describe an exacerbation. The vivid descriptions given by patients include imagery of volcanos, constricting bands and grim faces and clearly show how much patients are affected when their symptoms get worse. Discussion: The term exacerbation has little meaning to patients and we recommend that clinicians should consider alternative language when communicating with patients and their carers.