Parental perspectives on the quality of life of children with Down syndrome

Abstract

Down Syndrome (DS) is the most common chromosome abnormality and the most frequent cause of developmental delay/intellectual disabilities in children. Although the investigation of the quality of life (QoL) is crucial in children with DS, relatively poor attention has been paid to this topic. The current study aimed to evaluate parent-reported QoL in a group of children with DS and identify children's individual and clinical features associated with different levels of QoL. We included in the study 73 children with DS (5–12 years) and investigated the parent-reported levels of QoL by means of the Pediatric Quality of Life Inventory. Cognitive level and the presence of behavioral difficulties were also evaluated. The overall parent-reported QoL of children with DS was high; emotional functioning was the domain with the highest level of QoL. Moreover, parents perceived low levels of QoL in children who exhibited low IQ, worse analogical reasoning, worse adaptive skills, more frequent challenging behaviors, more ritualistic/sameness behavior and more autistic symptoms. No differences emerged for family variables, namely parental education and employment, between the two groups with high and low QoL, as perceived by parents. The understanding of cognitive and behavioral factors - such as analogical reasoning, socio-communication abilities and challenging behaviors - related with different degrees of QoL in children with DS is crucial for the development of effective strategies to promote the improvement of the QoL.

Quality of life in Down syndrome in Brazil: a cross-sectional study

“…14 Fucà et al, in a cohort of 73 children with DS, also described a positive correlation between autistic symptoms and other behavioral conditions and low quality of life. 15 This study has certain limitations that are important to highlight. One major limitation of our report is the lack of standardization among the various research instruments used to assess quality of life, and the scarcity of studies in the context of DS further exacerbates this issue.…”

“… 14 Fucà et al, in a cohort of 73 children with DS, also described a positive correlation between autistic symptoms and other behavioral conditions and low quality of life. 15 …”

Unraveling Down Syndrome: From Genetic Anomaly to Artificial Intelligence-Enhanced Diagnosis

“…Parental awareness plays a crucial role in the context of Down syndrome, as it is essential for parents to possess a comprehensive understanding of the potential conditions associated with Down syndrome [55,56]. Such awareness can significantly contribute to the accurate diagnosis and appropriate treatment of this disorder [57,58].…”

The Stereotypical Image of People with Down Syndrome from the Viewpoint of Female Special Education Students at Mu’tah University

“…Finally, Down syndrome is erroneously thought to result in a diminished quality of life (Cohen, 2020). Appropriate care is imperative and can ameliorate the quality of life of people with Down syndrome (Cohen, 2020;Fucà et al, 2022;Lee et al, 2020).…”