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.