Department Child Health, Netherlands Organization for Applied Scientific Research (TNO), Leiden, The Netherlands.
PLoS One. 2011;6(7):e21879. doi: 10.1371/journal.pone.0021879. Epub 2011 Jul 21.
Children 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.
Over 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.
A 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.
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 HRQoL compared with children from the general population.
唐氏综合征（DS）患儿存在精神运动发育迟缓。我们调查了荷兰 8 岁 DS 患儿群体的发育水平、问题行为和健康相关生活质量（HRQoL）。将发育结果与普通人群 8 岁儿童的参考数据进行了比较。
在三年的时间里，全国 DS 患儿家长组织接触了所有 8 岁 DS 患儿的家长。通过麦卡锡儿童能力量表评估发育技能。使用儿童行为检查表来测量情绪和行为问题。采用 TNO-AZL 儿童生活质量问卷评估 HRQoL。应用方差分析比较组间差异。
共有 337 名儿童参与了研究。平均发育年龄明显低于平均日历年龄（3.9 岁，标准差 0.87 和 8.1 岁，标准差 0.15）。男孩的平均发育年龄显著低于女孩（分别为 3.6（标准差 0.85）和 4.2 岁（标准差 0.82）；p<0.001）。与普通人群相比，DS 患儿的情绪和行为问题更多（p<0.001）。然而，在焦虑/抑郁量表上，他们的得分明显更有利（p<0.001）。发现粗动作技能、自主性、社会功能和认知功能等方面的 HRQoL 评分显著较低（p 值<0.001）。在身体不适、积极和消极情绪方面，几乎没有观察到差异。
8 岁 DS 患儿的平均发育延迟约 4 年，较普通人群儿童更易出现情绪和行为问题，且 HRQoL 较差。
