Improving the experience of living with extensive chronic wounds: innovative products and methodologies for wound care in patients with epidermolysis bullosa
Submitting InstitutionKing's College London
Unit of AssessmentAllied Health Professions, Dentistry, Nursing and Pharmacy
Summary Impact TypeTechnological
Research Subject Area(s)
Medical and Health Sciences: Clinical Sciences, Nursing, Public Health and Health Services
Summary of the impact
Adults with epidermolysis bullosa have extensive chronic wounds that
seriously compromise their quality of life. Research at King's College
London (KCL) has led to the development and commercialization of an
innovative range of dressing retention garments, Skinnies WEB™, which
radically improve patient experience and significantly reduce costs. KCL
work has also generated a range of novel methodologies for research
including a validated n-of-1 design for proof of concept tests, a
validated model for engaging users in the design and development of
medical devices and the TELER clinical notemaking system for wound care,
which has been adopted internationally. This work has generated new
business opportunities (product lines and roll-outs) for four UK
Initial research at King's College London (KCL) by Dr Patricia Grocott
(Research Fellow/ Senior Research Fellow, 2001-2007; Reader in Palliative
Wound Care, 2007-present) and Professor Dame Sarah Cowley (Lecturer/Senior
Lecturer, 1992-97; Professor of Community Practice Development, 1997-2012)
with people with non-healing cancerous wounds revealed that wound dressing
products were ineffective because manufacturers lacked understanding of
patients' needs (Ref 1). The first project we established to address this
problem — Woundcare Research for Appropriate Products (WRAP) — was an
innovative model of non-competitive collaboration between academic
researchers, clinicians and industrial partners. WRAP (2001-2004) was led
by KCL in collaboration with the University of Birmingham, Oxford
Radcliffe NHS Trust, Bradford NHS Foundation Trust, Guy's and St Thomas'
Hospital Trust (GSTT) and 12 industrial partner companies. WRAP focused on
developing replicable methodologies and tools to support the translation
of patient needs into effective wound care products. WRAP outputs included
a standardised method of testing fluid uptake into dressings and a 3D
imaging system for measuring how skin moves under dressings, which helps
explain why dressings fail (Ref 2).
Through adapting a clinical note-making system originally developed by a
mathematician, Mr AA Le Roux, for use in the fields of physiotherapy and
stroke rehabilitation, we established a novel methodology for evaluating
clinical outcomes in complex wound care, based on patient recorded outcome
measures. The TELER system developed and validated in WRAP enables
practitioners to easily evaluate precise clinical changes in wounds
undergoing treatment, for example by measuring control of exudates, and a
range of other physiological attributes typical for wound healing and
management (Ref 3).
The next phase of wound care research, led by KCL from 2005-8, was
undertaken as part of the MATCH (Multidisciplinary Assessment of
Technologies Centre for Healthcare) project, in collaboration with the
Universities of Brunel, Birmingham, Nottingham and Ulster, GSTT and four
industrial companies. Our investigation of ways to engage users in
research on medical devices resulted in a replicable model for engaging
users in wound care device user engagement in wound care device
development (Ref 4).
Insights gained from research participants about patient experience of
wound care and methodologies developed in WRAP and MATCH underpinned our
next project, focusing on people with epidermolysis bullosa (EB). EB is a
rare inherited skin condition affecting an estimated one in 17,000 people
in the UK and those with EB represent a group whose needs epitomize the
considerable struggle that people with extensive wounds have with their
dressings. The Woundcare for Epidermolysis Bullosa (WEB) project ran from
2009-2012 and was led at KCL in collaboration with St John's Institute of
Dermatology at GSTT, Debra (the charitable foundation that supports people
with EB worldwide), Longhand Data Limited, a fashion designer and knitwear
manufacturer and adults with EB (Refs 5, 6 and 7). Through a series of
workshops involving adults with EB, their carers, and specialist nurses,
we identified a range of limitations of current dressings and bandages,
including problems with dressing fit, stability, comfort, temperature and
exudate. The WEB project focused on finding new solutions to the challenge
of containing and holding in place patch-worked dressings for extensive
In WEB we also developed the digital application of TELER for EB,
including an EB Deficit Index that measures the impact of EB on individual
wellbeing and functioning, and an automated system for calculating index
References to the research
Ref 1 Grocott P, Cowley S. The palliative management of fungating
malignant wounds — generalising from multiple-case study data using a
system of reasoning. International Journal of Nursing Studies
2001;38(5):533-45. Doi: http://dx.doi.org/10.1016/S0020-7489(00)00098-5.
(Scopus citations 18)
Ref 2 Cowley S, Grocott P. Research design for the development and
evaluation of complex technologies: an empirical example and critical
discussion. Evaluation 2007; 13(3):285-305. Link: http://evi.sagepub.com/content/13/3/285.short.
(Scopus citations 3)
Ref 3 Browne N, Grocott P, Cowley S, Cameron J, Dealey C, Keogh A,
Lovatt A, Vowden K, Vowden P. Woundcare Research for Appropriate Products
(WRAP): validation of the TELER method involving users. International
Journal of Nursing Studies 2004; 41(5):559-71. Link: http://www.sciencedirect.com/science/article/pii/S0020748903002098.
(Scopus citations 13)
Ref 5 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 2012 Apr 9.
Doi:10.1111/j.1742-481X.2012.00972.x. (Scopus citations 0)
Ref 6 Grocott P, Blackwell R, Weir H, Pillay E. Living in
dressings and bandages: findings from workshops with people with
Epidermolysis bullosa. International Wound Journal 2012 Apr 4.
Doi:0.1111/j.1742-481X.2012.00973.x. (Scopus citations 0)
Ref 7 Grocott P. Blackwell R, Currie C, Pillay E, Clapham J,
Graham-King P, Hon J, Snelson K. Woundcare research for epidermolysis
bullosa: designing products with users. Dermatological Nursing
2013;12(1):30-5. (No Scopus data)
• Enhancing current skin and wound care and patient outcomes for
epidermolysis bullosa (WEB Case Study) Guy's and St Thomas'
Charitable Foundation G090706 (Grocott PI) £115,000, 2010-12.
• Web Case Study KCL Innovation and Futures Fund Award for
prototype development and evaluation (Grocott PI) £40,000, 2009.
• Multidisciplinary Assessment of Technologies Centre for Healthcare
EPSRC (Grocott Co-Investigator and KCL lead) £300,000 to KCL (of £6.3m
total funding), 2005-08.
• Woundcare Research for Appropriate Products (WRAP) EPSRC
(Cowley PI; Grocott Co-Investigator) £1,077,037, 2001-04.
Details of the impact
An innovative range of dressing retention garments
Work at King's College London (KCL) on the WRAP and MATCH projects
revealed the negative impact that extensive non-healing wounds can have on
daily life for people with life-long conditions like epidermolysis bullosa
(EB). These studies highlighted the critical role of wound dressings and
the extreme inadequacy of bandages as a method for holding patch-worked
dressings in place over extensive wounds. Patient participants identified
the development of a replacement for bandages as a key unmet need. These
findings led to the Woundcare for Epidermolysis Bullosa (WEB) project,
which produced an innovative range of dressing retention garments that
will hold wound dressings in a more stable system (Ref 7). These garments,
designed in collaboration with CLC Design Consultancy Limited, were
commercialised in 2012 as a new product line, Skinnies WEB™ (Source 1A),
under an exclusive licence from KCL with Skinwear Limited, and are now
marketed worldwide by Dermacea Limited.
People who have used the garments report a range of benefits including
comfort, healing of wounds that had persisted for years, improved ability
to wear clothes and shoes and enhanced self-esteem and confidence. The
following quotes are examples from participants in the WEB project (Source
"Absolutely amazing! It has improved my quality of life because it
keeps my dressings firmly in place, without needing to use so much tape,
which itself causes injuries. The wounds on my trunk are 30% due to
"A week ago I forgot to wash the garments...my regular carer put
bandages on my back ... [and I thought] oh my god, I don't want to go
back to that again."
The use of these garments also significantly reduces costs. Whereas
bandages for EB patients need to be cut off after a single use because of
heavy soiling, the Skinnies WEB™ garments can be reused 30-40 times. In
the WEB study, the average annual cost of wound care per participant
(including labour, time taken to do dressings and wound care products
used) was £85,118. Using the garments instead of bandages resulted in an
average annual saving of £10,943, approximately 13% of total wound care
costs (Ref 7).
One in four people with EB have a type of disease called dystrophic EB.
The use of Skinnies WEB™ gloves offers specific clinical benefits for
people with dystrophic EB, preventing the webbing of fingers associated
with that condition and thereby reducing the frequency of need for
surgery. The impressive performance of the gloves led study participants
and hand therapists to request a bespoke glove service, and in 2013 this
was introduced at Guy's and St Thomas' NHS Foundation Trust by the Senior
Hand Therapist to supply the Skinnies WEB™ webspacer gloves to delay
disease progression and finger webbing in dystrophic EB patients.
Data from the WEB study on the benefits of the new garments supported a
successful application to the Prescription Pricing Authority for listing
on the Drug Tariff (Source 1B) and patient access. The Skinnies WEB™
garment range is also listed in the International Best Practice Guidelines
for EB wound care (Source 1C). The WEB project won the 2013 Guardian
University Award in the `Outstanding Research' category (University Awards
Ideas Bank) (Source 2B). Debra, the charitable foundation that supports
people with EB and their families worldwide has highlighted Skinnies™ in
its news stories (Source 2A).
The TELER clinical note-making system
Following an introduction made by the KCL research team in 2009, the
intellectual property of TELER was sold by Mr Le Roux in January 2012 to
Longhand Data Limited, specialists in digital data capture and processing.
This has resulted in TELERwoundcare - a sophisticated system of digital
data capture, processing and analysis customised for routine clinical
care, telemedicine and research (Source 3A). The system also incorporates
a standard NHS referral process to which a photograph of a wound can be
added. Tissue viability nurses receiving data submissions from care homes
or field-based nurses can then triage the patient and respond
appropriately. The system allows data to be submitted through an iPad as
well as directly through a PC or using a mobile phone linked to a digital
pen and paper recording system.
TELERwoundcare is being adopted nationally and internationally in wound
care applications and telemedicine, licensed from Longhand. The system has
been adopted by the National Wound Healing Centre in Eastbourne, where a
team of tissue viability nurses are providing any qualified provider (AQP)
services in wound management to the NHS, and a number of NHS organisations
in the Yorkshire and Humber region and beyond have also expressed interest
in the system. TELERwoundcare has been adopted by IBERWounds, a
wound-healing clinic based in Lisbon that has developed an AQP-type
woundcare support service and will triage and supervise the treatment of
wounds in 150 residential care homes across Portugal, with Longhand
providing data collection and management services (Source 3B).
Woundcare4heroes are setting up a telehealth care system providing
intensive and follow up wound care for wounded servicemen and veterans,
following discharge from the Royal Centre for Defence Medicine at
University Hospitals NHS Foundation Trust (Source 3C). Longhand Data
Limited is providing TELERwoundcare for this service.
Sources to corroborate the impact
1) Skinnies™ WEB Dressing Retention Garment Style Range
B. Listing on the Drug Tariff from 2013-05-01
C. Inclusion in International Guidelines:
2) Skinnies™ in the news and patient feedback
A. Debra news report:
B. Guardian University Awards Ideas Bank: http://www.guardian.co.uk/higher-education-network/2013/feb/26/research-impact-winner-kings-college
C. Woundcare for Epidermolysis Bullosa Report, includes patient accounts
of their experiences with the garments (pdf available)
3) The TELERwoundcare system