Errors, gaps, and misconceptions in the disease-related knowledge of cystic fibrosis patients and their families

Abstract

A cross-sectional survey was conducted among 60 families with a child with cystic fibrosis to assess their medical knowledge of the illness. A 63-item, multiple-choice test with acceptable psychometric properties was administered to 60 mothers, 54 fathers, 29 siblings (aged 10 to 23 years), and 18 patients (aged 9 to 22 years). Parents and patients correctly answered approximately three quarters and siblings two thirds of all items. Family members were most knowledgeable about general cystic fibrosis facts, physiotherapy, gastrointestinal symptomatology and treatment, and anatomy. They were less well-informed about respiratory symptomatology and treatment and nutrition. Parental knowledge of genetics and reproductive risks was mediocre, and that of patients and siblings was poor. Knowledge of terminology was uniformly low. Social class was a significant predictor of parental knowledge. If left uncorrected the misconceptions, gaps, and errors in family members' knowledge of cystic fibrosis identified in this study could result in inadverent noncompliance in treatment of the patient.