King's College London, Florence Nightingale School of Nursing and Midwifery, London SE1 8WA, UK.
Int Wound J. 2013 Jun;10(3):274-84. doi: 10.1111/j.1742-481X.2012.00973.x. Epub 2012 Apr 4.
Epidermolysis bullosa (EB) is an inherited disorder causing extensive, painful skin blistering and wounds. Currently, there is no cure and the focus of care is on the clinical management of the skin and other affected body systems, together with supportive care to individuals and families. The wound care for Epidermolysis bullosa (WEB) project is a collaboration with adults with EB, carers, clinical nurse specialists, a designer and manufacturers to develop novel products for EB wound care. This article reports the findings from workshops with adults with EB, their carers and clinical nurse specialists, together with observations of dressing changes. A cluster of significant limitations were revealed in the performance of wound care products, designed to cover a single wound, when they are used to cover extensive and whole body wounds. A working hypothesis for EB wound care was developed from the findings, together with design concepts and new products for EB wound care. In addition, a model of user engagement in medical device development and evaluation has been tested.
大疱性表皮松解症（EB）是一种遗传性疾病，可导致广泛而疼痛的皮肤水疱和伤口。目前尚无治愈方法，护理重点是对皮肤和其他受影响的身体系统进行临床管理，以及为个人和家庭提供支持性护理。大疱性表皮松解症（WEB）项目的伤口护理是与患有 EB 的成年人、照顾者、临床护士专家、设计师和制造商合作，为 EB 伤口护理开发新型产品。本文报告了与患有 EB 的成年人及其照顾者和临床护士专家进行的研讨会的结果，以及对敷料更换的观察。当用于覆盖广泛的全身伤口时，设计用于覆盖单个伤口的伤口护理产品在性能上存在一系列显著的局限性。从研究结果、设计理念和 EB 伤口护理的新产品中，提出了 EB 伤口护理的工作假设。此外，还测试了一种用户参与医疗器械开发和评估的模型。
