Background and Aim: Phenylketonuria (PKU) is caused by the congenital disorder of phenylalanine metabolism, and leads to progressive mental retardation. The timely start of a diet can prevent the disease complications. This study aimed to investigate the effect educating parents has on controlling the serum phenylalanine level in children with phenylketonuria.
Materials and Methods: In this clinical trial study, 30 children with phenylketonuria (1-18 years) were investigated. The patients and parents were randomly divided into two groups: presence education (face to face and speech) and control. The levels of parents’ knowledge and serum phenylalanine in the children were investigated and recorded before and after intervention in all families in the three-month interval with the completion of questionnaires (demographic and disease) and venous blood samples, respectively. Data were analyzed using the paired t test, independent t-test.
Results: There was no statistically significant difference between families' knowledge and the serum phenylalanine level in the children in the intervention and control groups before and after educational intervention (P>0.05). However, after three months, in the intervention group the family knowledge significantly increased (p < 0.001), and in the control group, the serum phenylalanine level was decreased (P=0.04). In a comparison between the two groups, there was statistically significant difference in families’ knowledge after intervention (p < 0.05), but no significant difference was seen in the serum phenylalanine levels between the two groups (P>0.05).
Conclusion: According to this study: parents’ education increases their knowledge, but the serum phenylalanine levels are not controlled and this can represent that various factors influence the phenylalanine level. It is recommended that studies be conducted on the education effect in the adherence to the diet as well as comparing the effect of f education and economic support on the phenylalanine levels.