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Foot care in epidermolysis bullosa: evidence-based guideline.大疱性表皮松解症的足部护理:循证指南
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Orphanet J Rare Dis. 2025 Mar 16;20(1):128. doi: 10.1186/s13023-025-03635-1.
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Mapping the burden of severe forms of epidermolysis bullosa - Implications for patient management.绘制严重型大疱性表皮松解症的疾病负担——对患者管理的启示
JAAD Int. 2023 Mar 29;11:224-232. doi: 10.1016/j.jdin.2023.02.016. eCollection 2023 Jun.
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Podiatric assessment in children and adults with epidermolysis bullosa: are foot and ankle patient-reported outcome measures (PROMs) able to measure the severity of podiatric involvement among EB patients?大疱性表皮松解症儿童和成人的足病评估:足踝患者报告结局量表(PROMs)能否衡量大疱性表皮松解症(EB)患者足部受累的严重程度?
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Physiotherapy for epidermolysis bullosa: clinical practice guidelines.物理疗法治疗大疱性表皮松解症:临床实践指南。
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6
Clinical practice guidelines: Oral health care for children and adults living with epidermolysis bullosa.临床实践指南:大疱性表皮松解症患儿及成人的口腔卫生保健
Spec Care Dentist. 2020 Nov;40 Suppl 1(Suppl 1):3-81. doi: 10.1111/scd.12511.

本文引用的文献

1
Pain and quality of life evaluation in patients with localized epidermolysis bullosa simplex.局限性单纯性大疱性表皮松解症患者的疼痛与生活质量评估
Orphanet J Rare Dis. 2017 Jun 28;12(1):119. doi: 10.1186/s13023-017-0666-5.
2
Treatment of feet deformities in epidermolysis bullosa.大疱性表皮松解症足部畸形的治疗
Int Orthop. 2016 Jul;40(7):1361-5. doi: 10.1007/s00264-016-3135-1. Epub 2016 Feb 22.
3
Newborn Infant With Epidermolysis Bullosa and Ankyloglossia.患有大疱性表皮松解症和舌系带过短的新生儿
J Pediatr Health Care. 2016 Jul-Aug;30(4):390-5. doi: 10.1016/j.pedhc.2015.12.005. Epub 2016 Jan 29.
4
Losartan ameliorates dystrophic epidermolysis bullosa and uncovers new disease mechanisms.氯沙坦可改善营养不良性大疱性表皮松解症并揭示新的疾病机制。
EMBO Mol Med. 2015 Sep;7(9):1211-28. doi: 10.15252/emmm.201505061.
5
Adopting a Sustainable Community of Practice Model when Developing a Service to Support Patients with Epidermolysis Bullosa (EB): A Stakeholder-Centered Approach.在开发一项支持大疱性表皮松解症(EB)患者的服务时采用可持续实践社区模式:以利益相关者为中心的方法。
Patient. 2015 Feb;8(1):51-63. doi: 10.1007/s40271-014-0097-5.
6
Inherited epidermolysis bullosa: updated recommendations on diagnosis and classification.遗传性大疱性表皮松解症:诊断和分类的更新建议。
J Am Acad Dermatol. 2014 Jun;70(6):1103-26. doi: 10.1016/j.jaad.2014.01.903. Epub 2014 Mar 29.
7
Development, reliability, and validity of a novel Epidermolysis Bullosa Disease Activity and Scarring Index (EBDASI).新型大疱性表皮松解症活动和瘢痕指数(EBDASI)的制定、可靠性和有效性。
J Am Acad Dermatol. 2014 Jan;70(1):89-97.e1-13. doi: 10.1016/j.jaad.2013.09.041.
8
Measures of foot function, foot health, and foot pain: American Academy of Orthopedic Surgeons Lower Limb Outcomes Assessment: Foot and Ankle Module (AAOS-FAM), Bristol Foot Score (BFS), Revised Foot Function Index (FFI-R), Foot Health Status Questionnaire (FHSQ), Manchester Foot Pain and Disability Index (MFPDI), Podiatric Health Questionnaire (PHQ), and Rowan Foot Pain Assessment (ROFPAQ).足部功能、足部健康及足部疼痛的测量方法:美国矫形外科医师学会下肢结局评估:足与踝关节模块(AAOS - FAM)、布里斯托尔足部评分(BFS)、修订版足部功能指数(FFI - R)、足部健康状况问卷(FHSQ)、曼彻斯特足部疼痛与残疾指数(MFPDI)、足病健康问卷(PHQ)以及罗恩足部疼痛评估(ROFPAQ)。
Arthritis Care Res (Hoboken). 2011 Nov;63 Suppl 11(0 11):S229-39. doi: 10.1002/acr.20554.
9
Botulinum toxin in the treatment of sweat-worsened foot problems in patients with epidermolysis bullosa simplex and pachyonychia congenita.肉毒毒素治疗单纯型大疱性表皮松解症和先天性厚甲症患者的汗症性足部问题。
Br J Dermatol. 2010 Nov;163(5):1072-6. doi: 10.1111/j.1365-2133.2010.09927.x.
10
AGREE II: advancing guideline development, reporting and evaluation in health care.《AGREE II:推进卫生保健领域的指南制定、报告与评估》
CMAJ. 2010 Dec 14;182(18):E839-42. doi: 10.1503/cmaj.090449. Epub 2010 Jul 5.

大疱性表皮松解症的足部护理:循证指南

Foot care in epidermolysis bullosa: evidence-based guideline.

作者信息

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

机构信息

EB Department, Great Ormond Street Hospital for Sick Children, London, U.K.

Royal London Hospital for Integrated Medicine, UCLH, London, U.K.

出版信息

Br J Dermatol. 2020 Mar;182(3):593-604. doi: 10.1111/bjd.18381. Epub 2019 Oct 23.

DOI:10.1111/bjd.18381
PMID:31397882
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7065089/
Abstract

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.

摘要

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。