Knowledge of cystic fibrosis in patients and their parents

A standardized questionnaire was used to assess knowledge about cystic fibrosis in 28 patients with cystic fibrosis (aged 10 to 21 years) and in the parents of 25 of these patients. Knowledge of disease pathophysiology and treatment was generally comprehensive and detailed; knowledge of the genetics was fair. However, there were conspicuous deficits in the awareness of reproductive risks and of male sterility. Significant predictors of patient knowledge were patient age, sex, and educational level and parental age. Predictors of parent knowledge were Shwachman score, socioeconomic status, and sex of responding parent. Patients rely heavily on parents for information about cystic fibrosis. More than one third of both patients and parents sought more information about the disease and its implications.