What Do Children With Cystic Fibrosis and Their Parents Know About Nutrition and Pancreatic Enzymes?

Abstract

Objective To describe the development and validation of questionnaires designed to assess nutrition and pancreatic enzyme replacement therapy knowledge and cystic fibrosis self-management skills, and the results obtained when the questionnaires were used. Design A cross-sectional study using validated questionnaires to interview the respondents. The outcome measures were scores for knowledge, appropriate and inappropriate self-management, and Socioeconomic Index. Subjects Forty-two children with cystic fibrosis aged 6 to 11 years and 55 caregivers of 2 to 11-year-old patients of the Princess Margaret Hospital Cystic Fibrosis Clinic, Perth, Australia. Statistical analyses Descriptive statistics and correlations between scores were used for statistical analyses. Associations between knowledge scores were examined using Pearson's correlation coefficient. Spearman's rank correlation was used to examine the associations between knowledge and self-management scores and socioeconomic index. Results Children's and caregivers’ mean knowledge scores were 63% and 85%, respectively. Mean appropriate and inappropriate self-management scores for children were 55% and 21%, respectively, and for the caregivers were 74% and 32%, respectively. There was a statistically significant (P < .05) positive association between caregivers’ and children's knowledge (r=0.32), and children's knowledge and appropriate self-management scores (r=0.41); and a statistically significant negative association between caregivers’ knowledge and inappropriate self-management scores (r=-0.35); and no statistically significant associations between Socioeconomic Index and children's and caregivers’ knowledge and self-management scores. Applications This study identified areas in which the nutrition knowledge of children with cystic fibrosis and their caregivers needs to be enhanced to increase the likelihood that optimum dietary and pancreatic enzyme therapy is achieved. The questionnaires that were developed for the study could be refined and used in the clinical setting to identify knowledge and self-management deficits. Alternatively, the questionnaires could become valuable research tools for assessing the type of intervention required and in planning and evaluating programs. J Am Diet Assoc. 2000;100:1494-1500.