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小儿镰状细胞病中心的基本、最佳和建议组成部分的共识定义。

Consensus definition of essential, optimal, and suggested components of a pediatric sickle cell disease center.

机构信息

Division of Pediatric Hematology/Oncology, Washington University in St. Louis School of Medicine, St. Louis, Missouri, USA.

Division of Pediatric Hematology/Oncology, Children's Hospital at Montefiore/Albert Einstein College of Medicine, New York, New York, USA.

出版信息

Pediatr Blood Cancer. 2023 Jan;70(1):e29961. doi: 10.1002/pbc.29961. Epub 2022 Sep 12.

DOI:
10.1002/pbc.29961
PMID:36094289
Abstract

Sickle cell disease (SCD) requires coordinated, specialized medical care for optimal outcomes. There are no United States (US) guidelines that define a pediatric comprehensive SCD program. We report a modified Delphi consensus-seeking process to determine essential, optimal, and suggested elements of a comprehensive pediatric SCD center. Nineteen pediatric SCD specialists participated from the US. Consensus was predefined as 2/3 agreement on each element's categorization. Twenty-six elements were considered essential (required for guideline-based SCD care), 10 were optimal (recommended but not required), and five were suggested. This work lays the foundation for a formal recognition process of pediatric comprehensive SCD centers.

摘要

镰状细胞病(SCD)需要协调、专业的医疗护理,以达到最佳效果。美国目前尚无针对儿科综合性 SCD 项目的指南。我们报告了一项改良 Delphi 共识寻求过程,以确定综合性儿科 SCD 中心的基本、最佳和建议要素。19 名美国儿科 SCD 专家参与了此项研究。共识的定义是,对于每个要素的分类,有 2/3 的人达成一致。26 个要素被认为是必不可少的(基于指南的 SCD 护理所需),10 个是最佳的(推荐但并非必需的),5 个是建议的。这项工作为儿科综合性 SCD 中心的正式认可过程奠定了基础。

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