Study of the Dietary Habits and Quality of Life of People with Phenylketonuria

OBJECTIVES: The aim of our study included assessing the subjects' sociodemographic and anthropometric data, their health status and short-term symptoms associated with phenylketonuria (PKU). We intended to measure the regularity and effect of the consumption of the complementary formula, the proper following of the diet, the difficulties of preparing the diet menu, and how these parameters affect a variety of situations.

METHODS: In our quantitative cross-sectional study, we used the PKU-HQoL validated self-completed online questionnaire, submitted by 61 people suffering from PKU in Hungary. Our results were analyzed using descriptive methods, two-sample T-test, ANOVA method and χ²-test, with significance at p<0.05.

RESULTS: The average age of the respondents was 32.34±3.27 years. 19 people of the respondents were men and 42 people were women. Significantly (p=0.003) higher percentage of respondents tending to skip the intake of formula on a higher basis judged their health status to be worse, compared to those who were less likely to neglect the intake of the formula. Those who argued more often with their family or partner about PKU during the last 7 days (70.0%) had a higher probability to miss the consumption of complementary formula (p<0.001). Significantly (p=0.030) higher percentage of those who had felt embarrassed about having PKU among others more often (66.7%) had an increased likeliness to follow the PKU diet improperly, than their less embarrassed counterparts (34.8 %).

CONCLUSIONS: If the PKU diet is followed properly, and the complementary formula is consumed regularly and in the right amount, symptoms that would affect the quality of life of PKU patients rarely occur; therefore, with proper care, support and planning, it should be less of a burden to follow the PKU diet in any situations. More detailed examination of the issue requires further research.