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Patient & Carer Experience


Woundcare for Epidermolysis Bullosa (WEB) Project


Funded by: Guys and St Thomas Charitable Foundation & Kings College London Innovation Fund

Principal Investigator: Dr Patricia Grocott (KCL)

Co-Investigators: R. Blackwell (KCL), E. Pillay, J. Mellerio.

Project Period: March 2010 - Dec 2011


Project Summary

The aim of the project was to understand the experiences of people with Epidermolysis Bullosa (EB) with regard to their would care needs, to turn unmet needs into design solutions, and to evaluate their performance using patient recorded outcome measures.

Despite ongoing work to deal with the cause of EB, patients still face daily challenges in patchworking pre-sized and pre-shaped dressings, to cover extensive areas of blistered and damaged skin.

For this project a qualitative participatory design was adopted, Experienced Based Co-Design (EBCD). Patients, carers and clinicians all took part in an interative process of designing a two-layer body wrap system. This led to the developement of novel dressing retention garments which will form the first layer of the two-layer body wrap system.

A purposive sample of 15 adults with EB, their carers and clinical nurse specialists participated in the study. A designer and manufacturer developed and produced the garments from the needs defined by the EB group.

Qualitative methods were used to elicit participants' problems with current wound care and to prioritise the developement of new design concepts. The novel garments were evaluated using the TELER digital system of patient recorded outcome measures and the data analysed using thematic analysis.

The qualitative data indicate that the garments were effective in improving the participants' wound care and crucially, in preventing deteriorations. In addition savings on time spent on redressing wounds were recorded together with financial savings on dressing products.

The second phase of the study aims to develop the wound contact layer to work under the garments.



Grocott P, Blackwell R, Weir H, Pillay E. Living in dressings and bandages: findings from workshops with people with Epidermolysis Bulosa. International Journal Wound Journal. DOI 10.1111/j.1742-481x.2012.00973.x

Grocott P, Blackwell R, Currie C, Pillay E, Robert G. Co-producing novel wound care products for Epidermolysis Bullosa; an empirical case study of the use of surrogates in the design and prototype development process. International Wound Journal. DOI 10.1111/j.1742-481X.2012.00972.x


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