Abstract
ObjectiveChildren with Down syndrome (DS) have delayed psychomotor development. We investigated levels of development, problem behavior, and Health-Related Quality of Life (HRQoL) in a population sample of Dutch eight-year-old children with DS. Developmental outcomes were compared with normative data of eight-year-old children from the general population.MethodOver a three-year-period all parents with an eight-year-old child with DS were approached by the national parent organization. Developmental skills were assessed by means of the McCarthy Scales of Children's Ability. To measure emotional and behavioral problems we used the Child Behavior Checklist. HRQoL was assessed with the TNO-AZL Children's Quality of Life questionnaire. Analyses of variance were applied to compare groups.ResultsA total of 337 children participated. Mean developmental age was substantially lower than mean calendar age (3.9 years, SD 0.87 and 8.1 years, SD 0.15 respectively). Mean developmental age was significantly lower among boys than girls (3.6 (SD 0.85) and 4.2 years (SD 0.82) respectively; p<0.001). Compared with the general population, children with DS had more emotional and behavioral problems (p<0.001). However on the anxious/depressed scale, they scored significantly more favorably (p<0.001). Significantly lower HRQoL scores for the scales gross motor skills, autonomy, social functioning and cognitive functioning were found (p-values<0.001). Hardly any differences were observed for the scales physical complaints, positive and negative emotions.ConclusionEight-year-old children with DS have an average developmental delay of four years, more often have emotional and behavioral problems, and have a less favorable HRQoL compared with children from the general population.
Highlights
An important feature of children with Down syndrome (DS) is their delayed development
Mean developmental age was substantially lower than mean calendar age (3.9 years, standard deviation (SD) 0.87 and 8.1 years, SD 0.15 respectively)
Eight-year-old children with DS have an average developmental delay of four years, more often have emotional and behavioral problems, and have a less favorable Health-Related Quality of Life (HRQoL) compared with children from the general population
Summary
An important feature of children with Down syndrome (DS) is their delayed development. In the United States prevalence of DS is estimated to be 12 per 10,000 live births; in 2002 83,400 children with DS aged 0–19 years lived in the United States [1]. Children with DS have a well-recognized phenotype, including external characteristics, specific physical problems (such as congenital heart defects, gastro-intestinal disorders, thyroid dysfunction and visual impairment) and intellectual impairment with delayed cognitive and motor development [5,6]. This delayed development has frequently been studied during the past 50 years.
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