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

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 260 years range 17-49 years median FEVI 57 0% predicted range 20-127% predicted) Level of knowledge was correlated with clinical and sociodemographic characteristics Results Questionnaire validation showed acceptable internal consistency (alpha=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 I) 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 (C) 2010 Published by Elsevier B V on behalf of European Cystic Fibrosis Society