Quality of Life for Patients with Down Syndrome and Their Caregivers: A Cross-Sectional Study from a Parental Perspective in Saudi Arabia.

BACKGROUND

Patients with Down syndrome (DS) commonly experience psychological and mental problems. Studying the quality of life (QoL) of children with DS is important because it increases knowledge related to understanding the challenges that this group may face. This study aims to examine the QoL of children with DS from a parental perspective in terms of physical, emotional, social, and school domains, depending on several factors, and identify demographic characteristics of their parents that may affect their QoL.

METHODS

This online survey study was conducted in Saudi Arabia between November 2024 and March 2025. The inclusion criteria targeted parents of children with confirmed DS diagnoses aged between 8 and 18 years.

RESULTS

The findings of this study showed that children with DS aged between 0 and 2 years had significantly lower QoL scores (10.18 ± 3.83) compared to other age groups ( = 0.02). In addition, gender differences were significant in the emotional ( = 0.03), social ( = 0.01), and school ( = 0.01) domains, with females scoring lower QoL scores in all areas compared to males. Moreover, educational level showed significant results across all domains, particularly for children with no education, who had the lowest QoL scores in the physical domain (22.34 ± 7.53, = 0.004), emotional domain (10.41 ± 3.79, = 0.003), social domain (11.22 ± 4.06, = 0.001), and school domain (8.75 ± 5.09, = 0.001). The findings of this study showed that children with DS who are in primary school (odds ratio (OR) = 5.90, 95% confidence interval (CI): 1.85-18.78, = 0.003) and middle school (OR = 5.27, 95% CI: 1.44-19.31, = 0.012) had significantly higher odds of better QoL compared to children with no formal education. Additionally, children cared for by their fathers had significantly lower odds compared to those cared for by their mothers (OR = 0.07, 95% CI: 0.01-0.90, = 0.041). None of the demographic characteristics of caregivers reached a statistical significance level to have influence on caregivers QoL ( > 0.05).

CONCLUSIONS

The findings of this study demonstrated a low level of QoL, affecting the emotional, social, and school domains, especially among female children with DS aged between 0 and 2 years with no formal education and cared for by their fathers. Governments should develop a comprehensive plan to care for these children and families in order to enhance their rights and quality of life, thereby placing emphasis on those who exhibit parameters related to a lower QoL.