Khan M T, O'Sullivan M, Faitli B, Mellerio J E, Fawkes R, Wood M, Hubbard L D, Harris A G, Iacobaccio L, Vlahovic T, James L, Brains L, Fitzpatrick M, Mayre-Chilton K
EB Department, Great Ormond Street Hospital for Sick Children, London, U.K.
Royal London Hospital for Integrated Medicine, UCLH, London, U.K.
Br J Dermatol. 2020 Mar;182(3):593-604. doi: 10.1111/bjd.18381. Epub 2019 Oct 23.
This guideline was designed to provide service providers and users with an evidence-based set of current best practice guidelines for people and their families and carers, living with epidermolysis bullosa (EB). A systematic literature review relating to the podiatric care of patients with EB was undertaken. Search terms were used, for which the most recent articles relating to podiatric treatment were identified from as early as 1979 to the present day, across seven electronic search engines: MEDLINE, Wiley Online Library, Google Scholar, Athens, ResearchGate, Net and PubFacts.com. The Scottish Intercollegiate Guidelines Network (SIGN) methodology was used. The first guideline draft was analysed and discussed by clinical experts, methodologists and patients and their representatives at four panel meetings. The resulting document went through an external review process by a panel of experts, other healthcare professionals, patient representatives and lay reviewers. The final document will be piloted in three different centres in the U.K. and Australia. Following an EB community international survey the outcomes indicated six main areas that the community indicated as a priority to foot management. These include blistering and wound management, exploring the most suitable footwear and hosiery for EB, management of dystrophic nails, hyperkeratosis (callus), maintaining mobility and fusion of toes (pseudosyndactyly). The evidence here is limited but several interventions currently practised by podiatrists show positive outcomes.
本指南旨在为大疱性表皮松解症(EB)患者及其家人和护理人员的服务提供者和使用者提供一套基于证据的当前最佳实践指南。开展了一项与EB患者足部护理相关的系统文献综述。使用了检索词,通过七个电子搜索引擎,从1979年至今最早确定了与足部治疗相关的最新文章:医学文献数据库(MEDLINE)、Wiley在线图书馆、谷歌学术、雅典、ResearchGate、Net和PubFacts.com。采用了苏格兰校际指南网络(SIGN)的方法。在四次专家小组会议上,临床专家、方法学家、患者及其代表对第一版指南草案进行了分析和讨论。最终形成的文件经过了一个由专家小组、其他医疗专业人员、患者代表和普通评审人员组成的外部评审过程。最终文件将在英国和澳大利亚的三个不同中心进行试点。在一项针对EB患者群体的国际调查之后,结果表明该群体指出足部管理的六个主要优先领域。这些领域包括水疱和伤口管理、探索最适合EB患者的鞋类和袜子、营养不良性指甲的管理、角化过度(胼胝)、保持活动能力以及脚趾融合(假性并指)。这里的证据有限,但足病医生目前实施的几种干预措施显示出了积极效果。