文献简介

出版社:

作  者:Jennifer M. Chan , Amy Weisman, Alex King, Susan Maksomski, Carrissa Shotwell, Claire Bailie, Helen Weaver, Rebecca Bodan, Estrella Guerrero, Matija Zmazek and Phuong Khuu

编  号:

关键字:大疱性表皮松解症

年  份:2019   点击量:20

文献摘要 全文翻译

The purpose of this article is to summarize the Dystrophic Epidermolysis Bullosa Research Association (DEBRA) International evidence-based Clinical Practice Guidelines (CPGs) for the provision of occupational therapy (OT) for children and adults living with inherited epidermolysis bullosa (EB). This is a rare genetic disorder characterized by skin fragility leading to blister formation occurring spontaneously or following minor trauma. Current OT practice for persons with EB is based on anecdotal care, clinical expertise and trial and error with collaboration between caregiver and patient. Intervention based on research is needed to establish a foundation of knowledge to guide international practitioners to create and improve standards of care and to be able to work effectively with those living with the rare diagnosis of this condition.

本文主要总结了营养不良性大疱性表皮松解症研究协会(DEBRA)国际循证临床实践指南(CPGs),为儿童和成人大疱性表皮松解症患者的职业疗法提供指导建议。其是一种罕见的遗传性疾病,主要特征是皮肤脆弱导致自发性或轻微创伤后水疱形成。目前针对EB患者的职业疗法基于无对照护理,临床专业知识以及护理人员与患者之间协作反复试验。需要在研究的基础上进行干预,以建立知识基础,指导国际从业人员创造和提高护理标准,并能够与诊断为这种罕见疾病的患者有效地合作。