Abstract
Background
Phenylketonuria (PKU) is an inherited metabolic disorder characterized by high levels of phenylalanine in the blood and brain, resulting in mental retardation, etc. Dietary treatment with low phenylalanine is the common treatment for this disease. Patients with other metabolic disorders, such as diabetes mellitus, were reported to have a higher percentage of quality-of-life damage (QLD) and social discriminations (SDs).
Methods
To evaluate the degree (%) of maternal QLD and SD in relation to their educational status and place of living during the participation of their PKU children in public events, 110 mothers of PKU children with an average age of 25.7 years took part in this study. We evaluated their QLD and SD according to their educational status (primary school, high school and university) and place of living (small town ≤300,000, city >300,000 inhabitants). A control group was not needed. Special questions (checklist) were created to evaluate the QLD and SD of the mothers of children under dietary control. Cronbach’s α test was used for the measurement of the function of the items in the checklists.
Results
The covariance between the item pairs and the variance of the total score were calculated. Mothers who had completed primary school and lived in a city with a population >300,000 experienced the highest degree of QLD. In contrast, mothers with a university degree experienced the lowest SD. Overall, the highest SD was observed in mothers who lived in a small town. The affected group of mothers should be psychologically supported.
Author contributions: All the authors have accepted responsibility for the entire content of this submitted manuscript and approved submission. Konstantinos Iakovou designed the study. Ioannis Monopolis took care of the statistical analysis. Anna Madoglou oversaw the psychological and social part of the study. Kleopatra Schulpis supervised the entire study.
Research funding: None declared.
Employment or leadership: None declared.
Honorarium: None declared.
Competing interests: The funding organization(s) played no role in the study design; in the collection, analysis, and interpretation of data; in the writing of the report; or in the decision to submit the report for publication.
Key Messages: Maternal psychological problems while following the PKU diet.
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