Development, validation, and implementation of a questionnaire assessing disease knowledge and understanding in adult cystic fibrosis patients

BackgroundThe number of adults living with cystic fibrosis (CF) is increasing, necessitating an assessment of knowledge in this growing population.MethodsA 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.ResultsQuestionnaire 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).ConclusionsThis 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.