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大疱性表皮松解症患者获得伤口敷料的情况——澳大利亚视角

Access to wound dressings for patients living with epidermolysis bullosa - an Australian perspective.

作者信息

Stevens Louise J

机构信息

Professional Nursing Practice, Dip Higher Ed in Nursing (Adult/Child), Clinical Nurse Consultant, National Epidermolysis Bullosa Dressings Scheme, Brightsky Australia, Newington, NSW, Australia.

出版信息

Int Wound J. 2014 Oct;11(5):505-8. doi: 10.1111/j.1742-481X.2012.01116.x. Epub 2012 Nov 22.

Abstract

Epidermolysis Bullosa (EB) is a rare genetic skin disorder characterised by fragility and blistering of skin and mucous membranes. Skin can blister and shear away from minimal friction, trauma and every day activities. The disease causes a wide range of complications but wound care is the major challenge to severe EB, and good wound care is an essential part of wound management. The goal of wound care was to choose a product that protects the fragile skin, limits friction, decreases pain and promotes healing. However, access to wound dressings for those people living with EB is challenging. This article discusses the availability of EB dressings in a number of countries around the world and also describes an innovative National Epidermolysis Bullosa Dressings Scheme (NEBDS) in Australia, which aims to improve the quality of life of people with EB, by reducing the financial burden associated with the provision of dressings accordingly.

摘要

大疱性表皮松解症(EB)是一种罕见的遗传性皮肤病,其特征是皮肤和粘膜脆弱且易起泡。即使受到极小的摩擦、创伤和日常活动,皮肤也会起泡并剥离。该疾病会引发多种并发症,但伤口护理是重症EB面临的主要挑战,而良好的伤口护理是伤口管理的重要组成部分。伤口护理的目标是选择一种能保护脆弱皮肤、减少摩擦、减轻疼痛并促进愈合的产品。然而,对于患有EB的人来说,获得伤口敷料具有挑战性。本文讨论了世界上一些国家EB敷料的供应情况,并介绍了澳大利亚一项创新的国家大疱性表皮松解症敷料计划(NEBDS),该计划旨在通过相应减轻与提供敷料相关的经济负担,来提高EB患者的生活质量。

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