eTHINK研究:血友病儿童的认知和行为结果
Christine Mrakotsky1, Karin S Walsh2, Cathy Buranahirun Burns3
1Boston Children's Hospital/Harvard Medical School, Boston, MA.
The Journal of pediatrics
|May 11, 2024
概括
患有血友病的儿童和年轻人通常表现出正常的认知和适应性发展. 然而,一些人经历注意力缺陷和执行功能挑战,需要有针对性的查和干预.
科学领域:
- 儿科血液学 儿科血液学
- 神经发育儿科 神经发育儿科
- 临床心理学 临床心理学
背景情况:
- 当代对血友病的护理已经显著发展,促使对其对神经发育的影响进行评估.
- 血友病对神经发育,智力和其他认知功能 (eTHINK) 的影响研究 (NCT03660774) 开始研究这些影响.
- 了解血友病患者的长期认知和适应结果对于综合护理至关重要.
研究的目的:
- 评估患有血友病的儿童和年轻人的认知,行为和适应功能.
- 在这个人群中建立神经发育监测的规范性数据.
- 确定可能需要针对性的干预措施的特定年龄或患者群体.
主要方法:
- 一项前性,横截面的观察性研究,涉及551名年龄在1-21岁的男性,患有血友病A或B.
- 参与者接受了神经学检查和标准化的神经心理评估.
- 评估涵盖了早期发育,认知,情绪/行为调整和适应能力.
主要成果:
- 认知测试的表现在很大程度上与美国人口规范相当.
- 特定的年龄组 (4-5岁和10-21岁) 在注意力和处理速度方面表现出缺陷.
- 青少年和年轻人,特别是那些注意力缺陷/多动障碍 (ADHD) 患者,报告了更多的适应性和执行功能的日常生活挑战. 在青少年中,ADHD的发病率为21%.
结论:
- 患有血友病的男性通常表现出适合年龄的智力,行为和适应性发展.
- 在特定的子组中,人们对执行能力和适应能力发展的关注和担忧较低.
- 该研究提供了有价值的规范性数据,并强调了查和干预血友病患者认知和适应技能挑战的重要性.
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