DOI: 10.17826/cumj.1921670 ISSN: 2602-3032

Parental quality of life in children with inborn errors of metabolism receiving natural protein-restricted diets

Ezgi Burgaç, Merve Yoldaş Çelik, Burcu Köşeci, Canan Zengin
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Purpose: Natural protein-restricted diets are essential for the management of many inborn errors of metabolism to prevent metabolic decompensation and neurological complications. However, long-term dietary management may impose a significant psychosocial burden on families. This study aimed to compare parental quality of life between families of children requiring natural protein-restricted diets and families of children managed without dietary restrictions.Materials and Methods: This cross-sectional comparative study included 44 patients with inborn errors of metabolism; 22 were receiving restricted diets, while 22 were not on dietary treatment. Parental quality of life was assessed using the PedsQL 2.0 Family Impact Module.Results: Forty-four patients were included (22 receiving a protein-restricted diet and 22 with inborn errors of metabolism who were managed without dietary restrictions and received biotin). The mean total PedsQL score was significantly lower in the protein-restricted diet group compared to the non-diet group (56.3±10.9 vs. 83.7±10.8). All domain scores were significantly lower in the diet group, except for family relationships. In the protein-restricted diet group, the lowest scores were observed in the daily activities domain (43.5±18.7). Conclusion: Although growth can be preserved with appropriate dietary management, protein-restricted diets are associated with a substantial reduction in the quality of life of parents. Dietary burden may contribute significantly to impaired family well-being, highlighting the potential importance of integrated psychosocial support in the long-term management of these conditions.

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