Pressure ulcer patients help set the research agenda

Posted on 1 October 2012

A new survey asks patients, carers and clinicians to rate the importance of questions about the prevention and treatment of pressure ulcers to inform future research.

Pressure ulcers – pressure sores or bed sores - are hard-to-heal wounds that are painful for patients and distressing for both them and their carers. A wide range of interventions are available for their treatment and management, but evidence of their effectiveness remains limited.

It is important that we try to understand which of these treatment options are effective and make a difference to those affected

Dr Mary Madden

The James Lind Alliance Pressure Ulcer Priority Setting Partnership (JLAPUP), which includes charities, patients, clinicians and health scientists from the Universities of York and Manchester, is conducting a new survey to find out which questions about prevention and treatment matter most to those most affected.

Between January and May 2012 the partnership asked patients, carers and clinicians where they would like to see further research or where they thought there was uncertainty about the best medical and nursing care.  Nearly 1,000 questions about pressure ulcer prevention and treatment were gathered. Questions were checked to find whether existing research already provides a reliable and complete answer.  Patients, carers and clinicians are now being asked to judge the importance of the most frequently asked questions for which there are no reliable answers.

JLAPUP – which is funded by a National Institute for Health Research (NIHR) Programme Grant, as part of the Wounds Research for Patient Benefit Programme (WRPB) 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– needs as many patients, carers and clinicians as possible to take part in its prioritisation survey.

The survey can be completed online or on paper via the post, and responses will help to identify the top ten prevention and top ten treatment questions which will finally be chosen by March 2013.

Sally Crowe, of the James Lind Alliance and Chair of the Partnership, said: “Thanks to the hard work of the partnership so far the response to the initial survey was outstanding. We hope to engage with all of those that helped in the early stages again, this time to prioritise the research questions so that the important research gaps in preventing and treating pressure ulcers are clear.”

Dr Mary Madden, from the University of York’s Department of Health Sciences, said: “There are many different prevention and treatment options for pressure ulcers. It is important that we try to understand which of these options are effective and make a difference to those affected. We think it is vital that any further research into the prevention and treatment of pressure ulcers should focus on questions that are important to people with or at risk of pressure ulcers, the people who care for them and the health professionals (doctors and nurses) who treat and help prevent these ulcers.” 

Professor Nicky Cullum from the University of Manchester’s School of Nursing, Midwifery and Social Work, who leads the Wounds Research for Patient Benefit research programme said: “Many important research questions have come forward – it is now really important that we get patient, carer and clinician perspectives on their relative priority.”

For further information or to take part in the survey visit www.jlapressureulcerpartnership.co.uk or contact Richard Morley on 01904 321105.

Notes to editors:

  • The Wounds for Patient Benefit Programme conducts independent research commissioned 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. The NIHR provides the NHS with the support and infrastructure it needs to conduct first-class research funded by the Government and its partners alongside high quality patient care, education and training. Its aim is to support outstanding individuals (both leaders and collaborators), working in world-class facilities (both NHS and university), conducting leading edge research focused on the needs of patients. www.nihr.ac.uk
  • Programme Grants for Applied Research are awards made by the National Institute for Health Research (NIHR) to fund high quality research that addresses areas of priority or need for the NHS. Programme Grants award up to £2 million over three to five years to the best applied research teams from the NHS and academia working together to provide evidence to improve health outcomes in England through the promotion of health, the prevention of ill health and optimal disease management (including safety and quality). Programme Grants typically fund programmes of interrelated, high-quality research projects and associated infrastructure that are designed to deliver findings that can be directly and practically applied in the relatively near future, for the benefit of patients and the NHS. www.pgfar.nihr.ac.uk
  • The James Lind Alliance Pressure Ulcer 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 care;
    • assemble and publish these in the Database of Uncertainties about the Effects of Treatments (UK DUETs) which publishes treatment uncertainties from patients, carers, clinicians, and from research recommendations, covering a wide variety of health problems www.library.nhs.uk/duets/;
    • decide which of these research questions are most important.
    A list of the most important research questions will then be published and provided to organisations that fund research about pressure ulcer treatment and prevention.
    More information is available at: www.jlapressureulcerpartnership.co.uk or follow the JLAPUP on Twitter at www.twitter.com/JLAPUP
  • The James Lind Alliance is funded and supported by the Medical Research Council and the National Institute of Health Research. More information about the James Lind Alliance is available at www.lindalliance.org.
  • The Department of Health Sciences at the University of York is large and multidisciplinary, offering a broad range of taught and research programmes in the health and social care field, including nurse education (for which it was ranked the top department in the country for nursing education, by the 2011 Times Good University Guide). It aims to develop the role of scientific evidence in health and healthcare through high quality research, teaching and other forms of dissemination. In the recent national assessment of research quality, the University was rated equal first for its Health Services Research and fourth for its Nursing and Midwifery research. Visit www.york.ac.uk/healthsciences

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