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先天性膈疝患儿的护理组织——建立一个高效的先天性膈疝治疗项目。

Organization of care of infants with congenital diaphragmatic hernia-Building a high-functioning CDH program.

作者信息

Fernandes Caraciolo J, Gautham Kanekal S

机构信息

Department of Pediatrics, Division of Neonatology, Baylor College of Medicine/Texas Children's Hospital, Houston, TX, USA.

Nemours Children's Health System, University of Central Florida College of Medicine, Orlando, FL, USA.

出版信息

J Perinatol. 2024 Mar;44(3):339-347. doi: 10.1038/s41372-023-01789-z. Epub 2023 Oct 5.

Abstract

Infants born with congenital diaphragmatic hernia have high mortality and morbidity and require coordinated multidisciplinary care for optimal outcomes. Over the past several decades numerous articles have been published on the technical aspects of the care of these patients demonstrating both the variation in management across institutions as well as the desirability and need for standardization of care. Unfortunately, none have focused on the organization of care for CDH patients encompassing the range from early prenatal diagnosis to long-term postnatal care. However, to achieve optimal care and optimal outcomes, it is important to not only have excellent technical surgical and medical care but also to have an organized, systematic, and purposefully designed program for the delivery of healthcare to infants with this condition. In this article, based on our experience and drawing on general principles of building clinical programs, we describe the important elements of an ideal CDH program.

摘要

患有先天性膈疝的婴儿死亡率和发病率很高,需要多学科协作护理以实现最佳治疗效果。在过去几十年里,已经发表了许多关于这些患者护理技术方面的文章,这些文章既展示了各机构管理方式的差异,也表明了护理标准化的可取性和必要性。不幸的是,没有一篇文章关注先天性膈疝患者从产前早期诊断到产后长期护理的整个护理组织。然而,为了实现最佳护理和最佳治疗效果,不仅要有出色的手术技术和医疗护理,还要有一个有组织、系统且经过精心设计的医疗保健项目,为患有这种疾病的婴儿提供医疗服务。在本文中,基于我们的经验并借鉴构建临床项目的一般原则,我们描述了理想的先天性膈疝项目的重要要素。

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