title: Development, validation, and implementation of a questionnaire assessing disease knowledge and understanding in adult cystic fibrosis patients.
abstract: BACKGROUND
  The number of adults living with cystic fibrosis (CF) is increasing, necessitating an assessment of knowledge in this growing population.
  
  
  METHODS
  A questionnaire assessing CF knowledge was completed by 100 CF patients (median age: 26.0 years, range 17-49 years; median FEV₁: 57.0% predicted, range 20-127% predicted). Level of knowledge was correlated with clinical and sociodemographic characteristics.
  
  
  RESULTS
  Questionnaire validation showed acceptable internal consistency (α=0.75) and test-retest reliability (0.94). Patients had fair overall understanding of CF (mean=72.4%, SD=13.1), with greater knowledge of lung and gastrointestinal topics (mean=81.6%, SD=11.6) than reproduction and genetics topics (mean=57.9%, SD=24.1). Females and those with post-secondary education scored significantly higher (p<0.05).
  
  
  CONCLUSIONS
  This study validated a questionnaire that can be utilized to assess CF knowledge. Although CF patients understand most aspects of their disease, knowledge deficits are common - particularly regarding genetics and reproduction - and should be considered when developing CF education programs.
authors: National Referral Centre for Adult Cystic Fibrosis, St. Vincent's University Hospital, Dublin, Ireland.
authors: Karen R
authors: KR
authors: Siklosi
authors: Charles G
authors: CG
authors: Gallagher
authors: Edward F
authors: EF
authors: McKone
mesh_terms: D000293:Adolescent; D000328:Adult; D003550:Cystic Fibrosis / Q000523:psychology*; D005260:Female; D006266:Health Education; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008875:Middle Aged; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires / Q000592:standards*; D055815:Young Adult