Wong Joy Lynn, Khan Mohammed Tariq, Cowan Timothy L, Murrell Dedée F
Faculty of Medicine, University of New South Wales, High Street, Kensington NSW, Sydney, Australia.
Department of Dermatology, St George Hospital, Gray Street, Kogarah NSW, Sydney, Australia.
Int J Womens Dermatol. 2023 Jan 19;9(1):e046. doi: 10.1097/JW9.0000000000000046. eCollection 2023 Mar.
Epidermolysis bullosa (EB) represents a group of rare genetic skin fragility disorders characterized by (muco) cutaneous blistering upon minimal mechanical trauma. Ninety percent of EB patients experience podiatric symptoms which may affect physical functioning and emotional well-being. To date, an EB-specific podiatric assessment has not been outlined to guide clinicians in the assessment of EB podiatric involvement. This review describes the podiatric involvement of patients with EB and assesses the relevance of validated foot and ankle patient-reported outcome measures (PROMs) in measuring podiatric severity among EB patients. A literature review was conducted to identify systematic reviews and clinical studies investigating foot health and podiatric manifestations using validated foot health PROMs across foot and ankle conditions. Limited studies have documented the significance of podiatric involvement among EB patients. Existing EB-specific PROMs are not region-specific for assessing podiatric involvement. Among the foot and ankle PROMs, the Foot Health Status Questionnaire, Foot Function Index, and Manchester Oxford Foot Questionnaire were identified as potentially appropriate for assessing podiatric severity among EB patients, each with its strengths and limitations in assessment. However, they have not been widely validated for assessing dermatology-related diseases. An evaluation of the relevance of each identified PROM to EB podiatric assessment would enable future development of an appropriate EB-specific podiatric assessment tool that would guide management.
大疱性表皮松解症（EB）是一组罕见的遗传性皮肤脆性疾病，其特征是在受到最小程度的机械创伤后出现（黏液）皮肤水疱。90%的EB患者会出现足部症状，这可能会影响身体功能和情绪健康。迄今为止，尚未概述针对EB的足部评估方法，以指导临床医生评估EB患者的足部受累情况。本综述描述了EB患者的足部受累情况，并评估了经过验证的足踝患者报告结局量表（PROMs）在衡量EB患者足部严重程度方面的相关性。进行了一项文献综述，以确定使用经过验证的足部健康PROMs对足踝状况进行足部健康和足部表现调查的系统评价和临床研究。有限的研究记录了EB患者足部受累的重要性。现有的针对EB的PROMs在评估足部受累方面并非区域特异性的。在足踝PROMs中，足部健康状况问卷、足部功能指数和曼彻斯特牛津足部问卷被确定为可能适用于评估EB患者足部严重程度的量表，每个量表在评估中都有其优点和局限性。然而，它们尚未被广泛验证用于评估皮肤病相关疾病。对每种已确定的PROM与EB足部评估的相关性进行评估，将有助于未来开发一种合适的针对EB的足部评估工具，以指导治疗。
