School of Allied Health, La Trobe University, Melbourne, Vic., Australia.
Northern Health, Epping, Vic., Australia.
Dev Med Child Neurol. 2018 Apr;60(4):402-408. doi: 10.1111/dmcn.13670. Epub 2018 Jan 23.
To describe health-related quality of life of Australian children and adolescents with Down syndrome and compare it with norm-referenced data.
A cross-sectional survey was conducted with parents of 75 children and adolescents (43 males, 32 females) with Down syndrome aged 5 to 18 years (mean age 13y 2mo, SD 4y 8mo). The proxy-report KIDSCREEN-27 questionnaire was administered and five dimensions of health-related quality of life were measured. Data were analysed descriptively and compared with normative data.
Total group mean scores for psychological well-being, autonomy and parent relation, and school environment dimensions were within normal threshold values, whereas mean scores for physical well-being, and social support and peers dimensions, were poorer. For participants with Down syndrome aged 8 to 18 years, the difference with normative data for proxy-reported physical well-being, psychological well-being, and social support and peers dimensions favoured typically developing children. Adolescents (13-18y) with Down syndrome scored poorer on all dimensions than children (5-12y) with Down syndrome.
Our findings assist a better understanding of the lived experiences of children and adolescents with Down syndrome, as perceived by their parents, and suggest aspects of health that could be influenced to optimize their quality of life.
Proxy-reported psychological well-being and autonomy were within the normal range for children with Down syndrome. Physical well-being and social support scores were significantly lower than normative data. Proxy-reported scores for adolescents with Down syndrome were consistently poorer than for children with Down syndrome and the differences were clinically important.
描述澳大利亚唐氏综合征儿童和青少年的健康相关生活质量，并将其与参照标准数据进行比较。
采用横断面调查方法，对 75 名 5 至 18 岁（平均年龄 13 岁 2 个月，标准差 4 岁 8 个月）唐氏综合征儿童和青少年的父母进行调查。使用代理报告的 KIDSCREEN-27 问卷评估了五个维度的健康相关生活质量。对数据进行描述性分析，并与参考数据进行比较。
总群体的心理幸福感、自主性和父母关系以及学校环境维度的总分均处于正常阈值范围内，而身体幸福感以及社会支持和同伴维度的平均得分较差。对于 8 至 18 岁的唐氏综合征患者，代理报告的身体幸福感、心理幸福感和社会支持和同伴维度的得分与参照数据的差异有利于正常发育的儿童。唐氏综合征青少年（13-18 岁）在所有维度上的得分均低于唐氏综合征儿童（5-12 岁）。
我们的研究结果有助于更好地了解唐氏综合征儿童和青少年的生活体验，这是由他们的父母感知到的，同时也提示了可以改善健康状况以优化其生活质量的方面。
代理报告的心理幸福感和自主性处于唐氏综合征儿童的正常范围内。身体幸福感和社会支持评分明显低于参照标准数据。唐氏综合征青少年的代理报告评分始终低于唐氏综合征儿童，且差异具有临床意义。
