唐氏综合征儿童的发展,教育和服务:来自临床数据库的队列分析
Cara Soccorso1,2, Margaret Hojlo1, Katherine Pawlowski1
1Division of Developmental Medicine, Boston Children's Hospital, Boston, MA, United States.
Frontiers in psychology
|November 8, 2024
概括
患有唐氏综合征 (DS) 的儿童经历发育迟缓和行为挑战. 虽然大多数人接受早期干预,但老年儿童尽管需求更大,但获得的服务较少,这突出了定制支持的差距.
科学领域:
- 神经发育障碍 神经发育障碍
- 儿科发展心理学 儿科发展心理学
- 临床遗传学 临床遗传学
背景情况:
- 唐氏综合症 (DS) 呈现出可变的神经发育现象型和里程碑性成就.
- 在DS中发展轨迹的早期预测因素需要进一步识别.
- 在DS中,教育/服务提供与发展进步之间的关系尚不清楚.
研究的目的:
- 描述为患有DS的儿童提供教育和治疗的情况.
- 在一个专门的唐氏综合症计划 (DSP) 中分析发育和行为需求.
- 识别对DS患者服务的差距.
主要方法:
- 从专业的DSP对814名DS儿童进行回顾性分析 (2018年3月-2023年1月).
- 通过护理人员和临床医生报告的病史收集的数据.
- 用于分析不同年龄组的人口统计,技能,行为和服务的描述频率.
主要成果:
- 在所有发育领域都观察到延迟,具有共同的语言,沟通,学术和行为挑战.
- 几乎所有的孩子都接受了早期干预 (EI);许多孩子在EI后获得了非公开的疗法.
- 年长的孩子表现出更多的障碍,但收到的服务率较低,特别是行为和言语语言干预.
结论:
- 患有DS的个体在发育和行为方面表现出延迟,对治疗的需求未得到满足.
- 在治疗和教育服务的频率和定制方面存在重大差距.
- 政策变化是必要的,以使支持与DS儿童的个体发展水平保持一致.
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