Kids with Down syndrome have poorer QoL than typically developing children

A systematic review and meta-analysis show that children with Down syndrome (DS) have lower quality of life (QoL) than typically developing (TD) children.

“Children with DS have poorer overall caregiver-reported QoL compared with TD children and experience poorer social and school functioning, and adolescents with DS are at risk of further deterioration of QoL,” said the researchers.

In the 17 studies included (n=3,038), four QoL measures were used: Pediatric Quality of Life Inventory (PedsQL), KIDSCREEN, KidsLife, The Netherlands Organization for Applied Scientific Research Academic Medical Center Children’s QoL (TNO-AZL), and Personal Outcome Scale (POS). [Ann Acad Med Singap 2024;53:502-513]

In the meta-analysis of studies that used PedsQL, mean total scale score was lower in children with DS compared with TD children (70.28 vs 88.17). Scores were consistently lower in the former vs the latter arm across subdomains: physical health (71.66 vs 89.59), psychosocial health (67.83 vs 85.62), emotional functioning (73.83 vs 83.8), social functioning (66.5 vs 92.33), and school functioning QoL (65.68 vs 89.08), with the latter two being the most adversely affected based on standardized mean differences (–1.40 and –1.09, respectively).

Studies that used KIDSCREEN showed poor scores in the social support and peers domains among adolescents with DS vs normative European counterparts, and a link between QoL and the ICF-CY* participation section (R=–0.514; p<0.05), suggesting the importance of participation in physical activities among children with DS. [Adv Ther 2017;34:2058-2069; J Phys Ther Sci 2017;29:1377-1380] Another study showed that adolescents with DS (aged 13–18 years) had lower scores in all QoL domains vs their younger counterparts (aged 5–12 years), underlining extra vigilance among adolescents for possible QoL deterioration. [Dev Med Child Neurol 2018;60:402-408]

One study that used KidsLife and KidsLife-Down reported moderate to favourable levels of QoL among kids with DS (mean overall score, 89.7). [Child Care Health Dev 2021;47:85-93]

The study that used TACQOL/TAPQOL** showed that children with DS had a pronounced developmental delay, a higher frequency of emotional and behavioural problems, and a less favourable QoL vs TD children. [PloS One 2011;6:e21879]

The study that used POS associated bad QoL with family history of alcohol abuse, psychiatric condition, and comorbidities such as autism and epilepsy. [Arq Neuropsiquiatr 2023;81:943-948]

Clinical implications

“Clinical care of children with DS should include QoL assessment to identify gaps in service needs for targeted interventions. Targeted enhanced screening of QoL for adolescents with DS is recommended,” the researchers said.

“Based on our review, we recommend QoL measurements to be done every 6 months. During early childhood, this would allow healthcare providers to track caregivers’ perception of their child’s QoL as caregivers adapt to the child’s diagnosis and medical conditions,” they noted.

The researchers recommended using KidsLife-Down as it specifically evaluates QoL of children and young adults with DS. “Due to the potential risk of QoL deterioration during the adolescent and adult years, QoL during this period needs to be closely monitored. An unexpected change in QoL may suggest a change in clinical condition.”

“QoL may be used as a surrogate marker of the individual’s health,” they concluded.

Focus on skills development beyond school years

In an accompanying editorial, Dr Cristelle Chow from the Department of Paediatrics at KK Women’s and Children’s Hospital, Singapore, noted that healthcare professionals and educators should advocate for sustainable education systems that support skills development beyond typical schooling years, as children and young adults with DS still do not experience a QoL on par with typically developing individuals. [Ann Acad Med Singap 2024;53:466-467]

“As society better understands the potential for development and socialization of individuals with DS, there must be adaptations in social awareness, adaptive technologies, and employment opportunities. This will enable them to contribute meaningfully to their community, reduce caregiving burden, and enhance the QoL of individuals with DS and their families,” she added.