家长报告新生儿查后使用发育服务的情况
Elizabeth Reynolds1, Sarah Nelson Potter1, Samantha Scott1
1RTI International, 3040 E. Cornwallis Road, Research Triangle Park, P.O. Box 12194, Research Triangle Park, NC 27709, USA.
International journal of neonatal screening
|January 23, 2025
概括
近75%的新生儿查 (NBS) 情况的婴儿获得了发展服务,主要是私人疗法. 许多患有NBS的儿童仍然经历了尽管医疗护理的发展延迟,突出了改善服务获取的必要性.
科学领域:
- 儿科 儿科 儿科
- 遗传学 遗传学 是一个
- 发展生物学 发展生物学
背景情况:
- 新生儿查 (NBS) 识别了患发育迟缓风险的婴儿.
- 发展服务包括C部分早期干预 (EI),私人疗法和美国的学校服务.
研究的目的:
- 检查诊断为NBS疾病的儿童中各种发育服务的利用率.
- 根据家长报告的结果,了解服务使用模式.
主要方法:
- 对153名患有27种不同NBS疾病的孩子的父母进行了在线调查.
- 收集的数据集中在他们的孩子获得的发展服务的类型和频率上.
主要成果:
- 大约75%的受访儿童使用了至少一个发展服务.
- 私人治疗是最常见的服务.
- 患有特殊疾病的儿童,如严重的综合免疫缺陷,先天性甲状腺功能低下症和庞培病,表现出可变但一般高的服务利用率.
结论:
- 许多通过NBS诊断的儿童,尽管进行了医疗干预,但继续出现发育迟缓.
- 需要进一步的研究来评估NBS计划在促进服务进入和优化服务交付流程中的作用.
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