全国状细胞中心联盟关于状细胞疾病健康维护的共识建议:一个共识声明
Seethal A Jacob1,2, Melissa Frei-Jones3, Sana Saif-Ur-Rehman4
1Division of Pediatric Hematology Oncology Stem Cell Transplant, Department of Pediatrics, Riley Hospital for Children, Indianapolis, Indiana.
JAMA network open
|November 13, 2025
概括
状细胞疾病 (SCD) 专家制定了针对终身协调护理的最新指南,重点是预防,管理并发症和治疗选择. 这些建议旨在提高护理标准,并在全球范围内协调SCD患者的做法.
科学领域:
- 血液学 血液学 血液学
- 遗传学 是一个遗传学.
- 公共卫生 公共卫生
背景情况:
- 状细胞疾病 (SCD) 是全球最常见的遗传性血液疾病.
- 尽管在资源丰富的环境中生存率有所提高,但SCD患者的护理差异和实践不一致性仍然存在.
- 解决这些差距对于SCD管理中的全球健康公平至关重要.
研究的目的:
- 为SCD和相关并发症患者的预防护理和治疗制定当前的,基于证据的建议.
- 为管理状细胞疾病提供全方位的指导.
主要方法:
- 来自国家状细胞中心联盟 (NASCC) 的41名儿科和成人SCD专家采用了修改后的Delphi共识方法.
- 三个共识小组于2022年和2023年召开,分别涉及41个和81个NASCC认可中心的代表.
- 文献审查和专家共识指导了专注于查,急性并发症管理和治疗的标准的制定.
主要成果:
- 建立了对SCD患者终身临床护理的共识标准和建议.
- 解决的关键领域包括例行查,患者教育,急性并发症的管理,和疾病修饰疗法,如氧尿素.
- 发现了需要进一步研究的现有证据中的差距.
结论:
- 来自SCD中心的终身协调护理对于SCD患者至关重要,从出生开始.
- 由于SCD的慢性和异质性,SCD管理需要SCD专家和初级保健医生之间的合作.
- 未来的研究应该专注于优化疾病修饰疗法,感染控制,并探索SCD的变革性治疗方法.
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