Health-related quality of life in parents of children with phenylketonuria in Tehran Province, Islamic Republic of Iran

Background: Parents of children with phenylketonuria are at risk of reduced quality of life. Aims: This study determined the quality of life of parents of children with phenylketonuria in Tehran Province. Methods: The study was conducted in 2015 and included parents of children with phenylketonuria referred to three government children's hospitals in Tehran Province that provide phenylketonuria services. Data were collected using the Farsi version of the World Health Organization Quality of Life-Bref questionnaire. Analysis of variance, t-test, Pearson correlation coefficient and multiple linear regression were used to assess the relationship between quality of life domains and sociodemographic characteristics of the parent and child. Results: The study included 240 parents; 55% were mothers. Quality of life of parents in psychological, social relationships and environment domains was low. Significant relationships were found between: physical domain and age of child at phenylketonuria diagnosis (P = 0.044); psychological domain and parent's age (P = 0.019), child's age (P = 0.007) and parent's education (P = 0.015); social relationships domain and parent's age (P = 0.003), and education (P = 0.002), household income (P = 0.025) and child's age (P = 0.004; and environmental domain and residence (P = 0.034), parent's education (P = 0.007), household income (P = 0.002) and child's age (P = 0.049). In the multivariable analysis, parent's age and education, child's age, and household income were significantly associated with parent's quality of life. Conclusion: Given the low levels of quality of life in the parents, education and more financial support are recommended.