title: Patient indicators of a pulmonary exacerbation: preliminary reports from school aged children map onto those of adults.
abstract: BACKGROUND
  Despite the importance of identifying and managing a pulmonary exacerbation, and its use as an outcome measure in interventions, there is no standardised definition in cystic fibrosis. In achieving standardised criteria it is important to identify patient-reported indicators.
  
  
  METHODS
  Interviews were undertaken with 35 school aged children. They reported symptoms experienced during a pulmonary exacerbation in two ways: the first symptoms they become aware of, and how they recognised when they were improving. Interviews were taped, transcribed verbatim and the data analysed thematically.
  
  
  RESULTS
  For many children, the onset of an exacerbation was characterised by 'cold' symptoms, tiredness, and changes in cough. For those with moderate or severe disease, sleep disruption, activity induced breathlessness, changes in mood, sputum volume and lack of appetite were common. When describing improvement children focused initially on activities they were now able to perform accompanied by improvements in tiredness and cough. Those with moderate or severe disease also reported improvements in sleep and mood, breathlessness, sputum volume and colour.
  
  
  CONCLUSIONS
  Child-reported indicators of a pulmonary exacerbation tend to map onto those reported by adults. These results provide the rationale for the development of a single scale for school age children and adults that could be sensitive to progressive stages of CF disease.
authors.affiliation: School of Psychology, University of Central Lancashire, Preston, PR1 2HE, UK. jabbott@uclan.ac.uk
authors.forename: J
authors.initials: J
authors.lastname: Abbott
authors.forename: A
authors.initials: A
authors.lastname: Holt
authors.forename: A M
authors.initials: AM
authors.lastname: Morton
authors.forename: A
authors.initials: A
authors.lastname: Hart
authors.forename: G
authors.initials: G
authors.lastname: Milne
authors.forename: S P
authors.initials: SP
authors.lastname: Wolfe
authors.forename: S P
authors.initials: SP
authors.lastname: Conway
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D003550:Cystic Fibrosis / Q000175:diagnosis* / Q000503:physiopathology; D018450:Disease Progression; D005260:Female; D005500:Follow-Up Studies; D005541:Forced Expiratory Volume; D006304:Health Status; D006305:Health Status Indicators; D006801:Humans; D008297:Male; D012574:Schools; D057566:Self Report / Q000706:statistics & numerical data*; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires