Health-Related Quality of Life in Individuals with Down Syndrome: Results from a Non-Interventional Longitudinal Multi-National Study

Abstract

F. Hoffmann-La Roche Ltd.

An investigation of the determinants of quality of life in adolescents and young adults with Down syndrome

“…Consistent with the findings from the international study where low scores were found in the “Social Support and Peers” domain [ 36 ], our other major finding related to the value of friendships and positive social relationships. Compared with those reported as having no friends, those with one to two friends had a higher Kidscreen score and it was much higher again in those with three or more friends.…”

“…To date there have only been two studies, both published very recently, examining QOL in Down syndrome in young people of a similar age range to ours [ 36 , 37 ]. Using Kidscreen-27, the earlier of the two compared individual domain scores with European normative data for the younger (12–18 year olds) component of their population while the second US study primarily involved a secondary analysis of PedsQL data collected in a study of body composition and metabolic risk in youth with Down syndrome [ 37 ].…”

Parent‐reported health‐related quality of life of children with Down syndrome: a descriptive study

“…Some aspects of health‐related quality of life in Down syndrome were similar to typically developing children. For example, proxy scores for the dimension autonomy and parent relation indicated strong support for the child within the family setting and adequate financial resources for his/her expenses and were similar to previous data for 49 adolescents with Down syndrome . Children and adolescents with Down syndrome in our study also had proxy‐reported scores within the normal range for the dimension describing the school environment indicating that the children felt supported by relationships with friends and teachers.…”

Adapting a Measure of Quality of Life to Children with Down Syndrome for the Development of Evidence-based Interventions

“…Given the aforementioned characteristics and support needs specific to people with DS, it is critical to better understand and measure QoL in this population. Most studies have focused on family QoL (Marchal, Maurice-Stam, van Trotsenburg, & Grootenhuis, 2016;Vadakedom et al, 2017) or health-related QoL (Graves et al, 2016) and found significantly poorer scores for youth with DS in comparison with normative data (Haddad, Bourke, Wong, & Leonard, 2018;Jung, Chung, & Lee, 2017;Rofail et al, 2017;Shields et al, 2018;Xanthopoulos et al, 2017). Yet individual QoL is a broader and more comprehensive construct that is not merely reduced to health-related wellness as other important domains and indicators that are relevant for children with DS need to be articulated in order to develop comprehensive interventions (Murphy et al, 2017;Newton, 2018).…”