重新定义神经发育障碍:非常早产利益相关者的观点
Anne Synnes1, Amarpreet Chera2, Lindsay L Richter2
1Department of Pediatrics, University of British Columbia and BC Children's Hospital Research Institute, Vancouver, BC V5Z 4H4, Canada.
Children (Basel, Switzerland)
|May 27, 2023
概括
父母和利益相关者发现,早产婴儿严重神经发育障碍的医学定义是不充分的. 将这些障碍重新分类是必要的,以与现实世界的感知保持一致,并改善对非常早产儿童的护理.
科学领域:
- 新生儿医学 新生儿医学
- 发育儿科 发育儿科
- 公共卫生 公共卫生
背景情况:
- 非常早产的孩子面临严重神经发育障碍 (NDI) 的风险.
- 目前的NDI分类是从医学上定义的,可能不反映利益相关者的观点.
- 了解利益相关者的观点对于准确的评估和支持至关重要.
研究的目的:
- 调查早产利益相关者对严重NDI分类的观点.
- 将利益相关者的看法与早产婴儿NDI的现有医学定义进行比较.
主要方法:
- 向家长和利益相关者分发了10个18个月大的临床场景,其中包括不同的NDI组件.
- 参与者对每个场景的儿童健康 (0-10级) 和严重程度进行了评分.
- 描述性地分析数据,并使用线性混合效应模型与对照场景进行比较.
主要成果:
- 827名利益相关者完成了4553个场景,健康分数从6到10不等.
- 与对照组相比,脑和语言延迟场景的健康评级明显较低.
- 对"严重"的看法差异很大,从认知延迟的5%到脑和语言延迟的55%.
结论:
- 大多数利益相关者不同意目前基于研究的关于早产儿严重NDI的定义.
- 严格的NDI的确定的定义需要重新评估.
- 重新定义严重的NDI对于与利益相关者的看法保持一致并提高临床相关性至关重要.
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