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针对因21-羟化酶缺乏所致经典型先天性肾上腺皮质增生症患者及其家庭的多学科循证护理模式。

An Evidence-Based Model of Multidisciplinary Care for Patients and Families Affected by Classical Congenital Adrenal Hyperplasia due to 21-Hydroxylase Deficiency.

作者信息

Schaeffer Traci L, Tryggestad Jeanie B, Mallappa Ashwini, Hanna Adam E, Krishnan Sowmya, Chernausek Steven D, Chalmers Laura J, Reiner William G, Kropp Brad P, Wisniewski Amy B

机构信息

Pediatric Endocrinology, University of Oklahoma Health Sciences Center, Oklahoma City, OK 73104, USA.

出版信息

Int J Pediatr Endocrinol. 2010;2010:692439. doi: 10.1155/2010/692439. Epub 2010 Mar 18.

Abstract

In 2002 a consensus statement pertaining to the management of classical congenital adrenal hyperplasia due to 21-hydroxylase deficiency was jointly produced by the Lawson Wilkins Pediatric Endocrine Society and the European Society of Pediatric Endocrinology. One of the recommendations of this consensus was that centers should maintain multidisciplinary teams for providing care and support to these patients and their families. However, the specifics for how this should be accomplished were not addressed in the original consensus statement. Here we interpret and translate the 2002 consensus statement recommendations into medical, surgical and mental health protocols. Additionally, we provide preliminary evidence that such protocols result in improved care and support for patients and families.

摘要

2002年,劳森·威尔金斯儿科内分泌学会和欧洲儿科内分泌学会联合发表了一份关于21-羟化酶缺乏所致经典型先天性肾上腺皮质增生症管理的共识声明。该共识的一项建议是,各中心应组建多学科团队,为这些患者及其家庭提供护理和支持。然而,最初的共识声明并未涉及如何实现这一点的具体细节。在此,我们将2002年共识声明中的建议解读并转化为医疗、外科和心理健康方案。此外,我们提供了初步证据,表明这些方案能改善对患者及其家庭的护理和支持。

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