The findings by the James Lind Alliance Pressure Ulcer Priority Setting Partnership (JLAPUP), which includes the Department of Health Sciences at York, suggest that more research is needed to guide practice on how to prevent and treat pressure ulcers – pressure sores or bed sores.
Treatment and prevention of pressure ulcers – hard-to-heal wounds that are painful for patients and distressing for patients, carers and clinicians – pose significant challenges and costs to the NHS.
The Partnership invited patients, service users, carers and health professionals to choose their top 12 pressure ulcer prevention and treatment research questions from a shortlist of the 30 most highly rated questions submitted and rated by five hundred stakeholders. Detailed investigation had shown no reliable or complete evidence to answer these and most other submitted questions.
JLAPUP is funded by the National Institute for Health Research (NIHR) as part of the Wounds Research for Patient Benefit Programme Grant for Applied Research at Leeds Community Healthcare NHS Trust in collaboration with the University of York’s Department of Health Sciences and the University of Manchester’s School of Nursing, Midwifery and Social Work.
Research Fellow Dr Mary Madden, of York’s Department of Health Sciences, said: “We planned to produce a top ten but after some tough negotiations between service users, carers and clinicians we settled on a top 12 – 12 is the new 10!”
JLAPUP workshop participant Carole Bennett, who has multiple sclerosis (MS) and cared for her mother, who also had MS and developed pressure ulcers, stressed the importance of involving patients and carers in research.
Carole Bennett, a member of PURSUN UK (Pressure Ulcer Research Service User Network UK), added: “Yes, of course everyone wants a cure for their conditions, but people living with the risk or reality of pressure ulcers and their carers also need some research to actually help them live with their condition and to be able to improve their quality of life here and now. Being involved in your own treatment enables you to actually have some control over your condition.”
Professor Nicky Cullum, from the University of Manchester’s School of Nursing, Midwifery and Social Work, who leads the Wounds Research for Patient Benefit Programme, said: “Research funds are precious so it is essential that we use them wisely to address the uncertainties that matter most to patients, carers and the clinicians who deliver care. This James Lind partnership has been focused on ensuring we get these priorities right.”
Nikki Stubbs Clinical Team Leader in Tissue Viability at Leeds Community Healthcare NHS Trust and clinical lead on the Wounds Research for Patient Benefit Programme said: “Nurses strive to do what is best for their patients. Uncertainties around pressure ulcer prevention and treatment can make conversations with patients and carers about managing risk really challenging. Developing answers through research is vital for everyone. The next stage is to encourage funders and researchers to rise to the challenge of addressing the agreed priorities.”
Dr. Tom Kenny, Director of External Relations, National Institute for Health Research Evaluation, Trials and Studies Coordinating Centre (NETSCC) said: “By combining the voices of patients and clinicians this partnership has identified 12 really important areas that I hope will stimulate high quality research in the near future”.
Top 12 Pressure Ulcer Uncertainties
1. How effective is repositioning in the prevention of pressure ulcers?
2. How effective at preventing pressure ulcers is involving patients, family and lay carers in patient care?
3. Does the education of health and social care staff on prevention lead to a reduction in the incidence of pressure ulcers and, if so, which are the most effective education programmes (at organisational and health/social care level)?
4. What is the relative effectiveness of the different types of pressure relieving beds, mattresses, overlays, heel protectors and cushions (including cushions for electric and self-propelling wheelchairs) in preventing pressure ulcers?
5. What impact do different service models have on the incidence of pressure ulcers including staffing levels, continuity of care [an on-going relationship with same staff members] and the current organisation of nursing care in hospitals?
6. What are the best service models (and are they sufficiently accessible) to ensure that patients with pressure ulcers receive the best treatment outcomes (including whether getting people with pressure ulcers and their carers more involved in their own pressure ulcer management improves ulcer healing and if so, the most effective models of engagement)?
7. For wheelchair users sitting on a pressure ulcer, how effective is bed rest in promoting pressure ulcer healing?
8. How effective are wound dressings in the promotion of pressure ulcer healing?
9. Does regular turning of patients in bed promote healing of pressure ulcers?
=10. Does improving diet (eating) and hydration (drinking) promote pressure ulcer healing?
=10. How effective are surgical operations to close pressure ulcers?
12. How effective are topical skin care products and skin care regimes at preventing pressure ulcers?
For further information visit www.jlapressureulcerpartnership.co.uk or contact Richard Morley on 01904 321105.
Notes to editors:
- The Wounds for Patient Benefit Programme presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research funding scheme (RP-PG-0407-10428).
- The National Institute for Health Research provides the framework through which the research staff and research infrastructure of the NHS in England is positioned, maintained and managed as a national research facility. For more information, visit www.nihr.ac.uk
- Programme Grants for Applied Research are awards made by the National Institute for Health Research (NIHR). For more information, visit www.pgfar.nihr.ac.uk
- The James Lind Alliance Pressure Ulcer priority Setting Partnership (JLAPUP) is a partnership of organisations representing patients, carers and clinicians. Its aim is for patients, carers and clinicians to work together to identify important areas where further research is needed to improve pressure ulcer care.
JLAPUP gathered nearly 1,000 questions about pressure ulcer prevention and treatment.
All intervention questions without a reliable or complete answer and where further research is called for, are being published on NHS Evidence in the UK Database of Uncertainties about the Effects of Treatments (DUETs)
The views of those who are older and in care homes were under-represented so we took shortlisted questions out to people in care homes for discussion.
On Thursday 28 March 2013, 27 patients, carers and health professionals came together at Shine, in Leeds to choose their top pressure ulcer prevention and treatment research questions from a shortlist of the 30 most highly rated questions submitted and rated by over five hundred stakeholders in all.
A list of the most important research questions is now being published and provided to organisations that fund research about pressure ulcer treatment and prevention.
- The James Lind Alliance is part of the NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC). More information about the James Lind Alliance is available at www.lindalliance.org.
- For more information on the Department of Health Sciences at the University of York visit www.york.ac.uk/healthsciences