Abstract
BACKGROUND: The Health-Related Quality of Life (HRQoL) of children with Down syndrome (DS) can be significantly affected by various physical, social, and cognitive elements. There is a scarcity of research on the HRQoL of Saudi children and its correlation with sociodemographic factors. Therefore, our objective was to evaluate the HRQoL of children under the age of 5 years with DS in the Western Region of Saudi Arabia. METHODS: The study included children under 5 years with DS who were receiving care at secondary care hospitals in Taif, Mecca, and Jeddah. The children were accompanied by their parents or caregivers, who provided sociodemographic and child-specific data as well as medical information. They completed a validated TNO-AZL Preschool Children Quality of Life (TAPQOL) questionnaire. The association between HRQoL and respondents' characteristics was assessed using independent samples t-test, ANOVA, Mann-Whitney, and Kruskal-Wallis tests. A multivariate linear regression analysis was conducted to examine the association between the TAPQOL scores and sociodemographic characteristics in children under the age of 5 years children with DS. RESULTS: A total of 460 responded to the questionnaire. The overall HRQoL score was high. The scores for physical functioning were relatively high, particularly for motor functioning (mean = 86.64) and skin health (mean = 85.68). In addition, social functioning exhibited a lower level, with a significant difference (mean = 25.29). The cognitive functioning scores exhibited variability, with communication scoring relatively high (mean = 76.68), while positive mood (mean = 19.51) and liveliness (mean = 21.25) were significantly low. There was a significant correlation between the educational level and occupation of both fathers and mothers and their HRQoL. Specifically, individuals with higher education and stable employment had better HRQoL scores. Parents' health also has an impact on HRQoL, with children of parents without comorbidities scoring higher. Furthermore, there was a significant association between higher sociodemographic levels of parents and improved HRQoL of the patients. CONCLUSIONS: The level of HRQoL among children with DS was high, particularly in the physical and cognitive domains. The sociodemographic factors of parents, specifically the level of education and occupation of fathers, have been identified as essential factors influencing HRQoL. Providing increased economic and educational support for families has a significant positive impact on the quality of life for these children.