Adaptation and Validation of a Questionnaire to Evaluate Knowledge of the Low Phe Diet in PKU

Phenylketonuria (PKU) is an autosomal recessive disorder of phenylalanine (Phe) metabolism, causing a build-up Phe in the body. Treatment consists Phe-restricted diet for life and regular determination blood levels to monitor intake Phe. Despite fact that cornerstone treatment, there are no studies examining common knowledge about food items whether they allowed as part PKU diet. Improving parents’ patients’ competence enables them make appropriate choices. This study validates food-knowledge questionnaire first developed Spanish modified English speaking populations. The potentially helps parents prepare meals healthcare providers create individualized educational programs children adolescents with this disorder.