让患有状细胞疾病的儿童的家长参与氧尿素的共同决策:ENGAGE-HU研究
Aimee K Hildenbrand1,2,3, Constance A Mara4, Bridget Murphy4
1Center for Healthcare Delivery Science, Nemours Children's Health, Wilmington, Delaware, USA.
Pediatric blood & cancer
|March 7, 2025
概括
基尿素共享决策 (H-SDM) 工具包并没有显著改善状细胞疾病 (SCD) 儿童的父母的决策不确定性或知识. 然而,它与提供和处方较低的基尿素率有关.
科学领域:
- 儿科血液学 儿科血液学
- 临床决策 - 临床决策
- 公共卫生 公共卫生
背景情况:
- 指导方针建议通过共享决策为患有状细胞病 (SCD) 的儿童提供早期基尿素.
- 基尿素共享决策 (H-SDM) 工具包是为了帮助临床医生在这个过程中而开发的.
- 该研究评估了工具包对家长决策不确定性,认知,知识和氨酸尿素吸收的影响.
研究的目的:
- 评估H-SDM工具包在改善家长参与氧尿素决策方面的有效性.
- 评估工具包对决策不确定性,共享决策认知和基尿素知识的影响.
- 确定H-SDM工具包对给患有SCD的儿童提供和开处方基尿素的可能性的影响.
主要方法:
- 使用交叉设计,网站最初处于常规护理状态 (临床医生口袋指南),然后切换到H-SDM工具包.
- 0-5岁儿童的护理人员有SCD有资格接受基尿素完成了基线,讨论后和3-7个月后的评估.
- 数据是在2018年至2022年期间收集的,其中很大一部分工具包参与者在COVID-19大流行期间注册.
主要成果:
- 在通常的护理和H-SDM工具包条件之间,在家长的决策不确定性,共享的决策认知或基尿素知识方面没有发现显著差异.
- 与工具包组相比,通常护理组的父母报告了更高的决策不确定性.
- 与工具包组相比,通常护理组的参与者中,提供 (80.7%) 和处方 (48.2%) 基尿素的比例较高 (58.7%提供,39.7%处方).
结论:
- "H-SDM工具包"可以增强家长对有关酸的决定的信心.
- 由于COVID-19大流行影响了研究的实施,因此需要进一步探索酸的吸收.
- 该工具包在临床环境中可能是最有益的,而不是经常使用共享决策来讨论氧尿素.
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