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Nixon J, Nelson EA, Rutherford C, et al. Pressure UlceR Programme Of reSEarch (PURPOSE): using mixed methods (systematic reviews, prospective cohort, case study, consensus and psychometrics) to identify patient and organisational risk, develop a risk assessment tool and patient-reported outcome Quality of Life and Health Utility measures. Southampton (UK): NIHR Journals Library; 2015 Sep. (Programme Grants for Applied Research, No. 3.6.)

Cover of Pressure UlceR Programme Of reSEarch (PURPOSE): using mixed methods (systematic reviews, prospective cohort, case study, consensus and psychometrics) to identify patient and organisational risk, develop a risk assessment tool and patient-reported outcome Quality of Life and Health Utility measures

Pressure UlceR Programme Of reSEarch (PURPOSE): using mixed methods (systematic reviews, prospective cohort, case study, consensus and psychometrics) to identify patient and organisational risk, develop a risk assessment tool and patient-reported outcome Quality of Life and Health Utility measures.

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Acknowledgements

Participants

We wish to express our gratitude to all of the patients who gave up their time and participated in this research programme.

Programme steering committee members

  • Chairperson 2009–10: Professor Dame Jill Macleod-Clark, Deputy Dean, Faculty of Medicine, University of Southampton, UK.
  • Chairperson 2011–13: Professor Elaine McColl, Director, Newcastle Clinical Trials Unit, University of Newcastle, UK.

External/independent members

  • Ms Juliette Cosgrove, Lead Nurse Patient Safety, Leeds Teaching Hospitals NHS Trust, UK.
  • Professor Amit Gefen, Professor in Biomedical Engineering, Faculty of Engineering, Tel Aviv University, Israel.
  • Professor Zena Moore, Associate Professor, Director of Nursing Research, Royal College of Surgeons in Ireland, Dublin.
  • Mr Alan Pickersgill, service user.
  • Mr Brian Rawson, service user.
  • Dr Lisette Schoonhoven, Assistant Professor in Nursing Science, Scientific Institute for Quality of Healthcare (IQ healthcare), Radboud University Medical Center, the Netherlands, and Reader at the Faculty of Health Sciences, University of Southampton, UK.
  • Professor Justin Waring, Professor of Health Systems and Policy, Nottingham University Business School, UK.

Pressure Ulcer Research Service User Network UK

We would like to sincerely thank all members of PURSUN UK for their continued hard work and dedication. Particular thanks go to the following people for their valuable input into the PURPOSE programme studies: Dr Philip Bell, Ms Carole Bennett, Dr Claire Ginn, Mr Bryan McArdle, Mrs Andrea McGoverin, Mr Alan Pickersgill, Mr Brian Rawson, Mrs Yvonne Rawson, Mrs Claire Roberts, Mrs Patricia Slater, Ms Kay Walker and Mr Ken Watson.

Chapter 3

We would like to sincerely thank Dr Carly Rivers who was the Senior Trial Co-ordinator during the set-up and delivery of the pain prevalence research projects and Caroline Fallon of ArjoHuntleigh (ArjoHuntleigh House, Bedfordshire, UK) who collaborated in the co-ordination and delivery of the acute trust prevalence surveys.

Chapter 4

We would like to sincerely thank Mrs Jackie Hansford, formerly of Bradford Teaching Hospitals NHS Foundation Trust, who was a co-applicant and made a decisive contribution to study conception and design and Dr Claire Ginn, who is a member of PURSUN UK and who made a critical contribution to the development of a methodology for root cause analyses of critical incidents.

Chapter 5

Co-authors on related papers

  • Professor Jose Closs, Professor of Nursing Research, School of Healthcare, University of Leeds, UK.
  • Professor Tom Defloor, Department of Nursing, University of Ghent, Belgium.
  • Professor Amanda Farrin, Professor of Clinical Trials and Evaluation of Complex Interventions, CTRU, University of Leeds, UK.
  • Dr Ruud Halfens, Department of Health Services Research, CAPHRI School for Public Health and Primary Care, Maastricht University, the Netherlands.

Members expert group and co-authors on papers

  • Professor Dan Bader, Faculty of Health Sciences, University of Southampton, UK.
  • Professor Dan Berlowitz, Bedford VA Hospital and Boston University School of Public Health, MA, USA.
  • Associate Professor Janet Cuddigan, College of Nursing Omaha Division, University of Nebraska Medical Center, NE, USA.
  • Professor Dawn Dowding, Columbia University School of Nursing, Columbia University, NY, USA.
  • Professor Amit Gefen, Department of Biomedical Engineering, Faculty of engineering, Tel Aviv University, Israel.
  • Dr Edward Jude, MD, MRCP, Tameside Hospital NHS Foundation Trust, University of Manchester, UK.
  • Associate Professor Cees Oomens, Biomedical Engineering Faculty, Eindhoven University of Technology, the Netherlands.
  • Dr Lisette Schoonhoven, Assistant Professor of Nursing Science, Scientific Institute for Quality of Healthcare (IQ healthcare), Radboud University Medical Center, the Netherlands, and Reader at the Faculty of Health Sciences, University of Southampton, UK.
  • Professor Jos Schols, Department of Family Medicine and Department of Health Services Research, CAPHRI School for Public Health and Primary Care, Maastricht University, the Netherlands.
  • Professor Peter Vowden, MD, FRCS, Clinical Director, NIHR Wound Prevention and Treatment Healthcare Technology Co-operative, Bradford Teaching Hospitals NHS Foundation Trust, UK.

Chapter 6

Multidisciplinary expert group

Tissue viability specialists

  • Professor Jane Nixon, Professor Andrea E Nelson, Professor Carol Dealey, Dr Elizabeth McGinnis, Mrs Susanne Coleman, Mrs Lyn Wilson and Mrs Nikki Stubbs.

Chronic pain specialist

  • Professor Michelle Briggs.

Outcome methodologists

  • Dr Yasmene Alavi, Research Fellow, Health Services Research Unit, London School of Hygiene & Tropical Medicine, UK.
  • Associate Professor Stefan Cano, Senior Lecturer in Psychometrics, Clinical Neurology Research Group, Peninsula College of Medicine and Dentistry, UK.
  • Professor Katerina Hilari, Reader, Joint Research Director and Senior Tutor for Research, Division of Language and Communication Science, City University London, UK.
  • Professor Donna Lamping, Professor of Psychology, Health Services Research Unit, London School of Hygiene & Tropical Medicine, UK.
  • Dr Sarah Smith, Senior Research Fellow, Health Services Research Unit, London School of Hygiene & Tropical Medicine, UK.

Co-authors on related papers

  • Dr Anna Madill, Reader in Qualitative Inquiry, Institute of Psychological Sciences, University of Leeds, UK.
  • Dr Jill Firth, Consultant Nurse in Rheumatology/Clinical Governance Lead, Visiting Senior Research Fellow, School of Healthcare, University of Leeds, UK.
  • Professor Jose Closs, Professor of Nursing Research, School of Healthcare, University of Leeds, UK.
  • Dr Yasmene Alavi, Research Fellow, Health Services Research Unit, London School of Hygiene & Tropical Medicine, UK.

Chapter 7

  • Teresa McGarry and Chris Heywood from Accent Research Agency, London, UK, for their help in running the valuation interviews.

Co-authors on related papers

  • Dr Richard Edlin, Senior Lecturer in Health Systems, School of Population Health, University of Auckland, New Zealand.

Research team members at participating sites

We are grateful to all of the clinical research team members and co-authors from the 30 NHS trusts who participated in this research and made it a part of their busy daily schedule. Without the commitment and support of the principal investigators (PIs), tissue viability nurse specialists (TVNS) and clinical research nurses (CRNs) in gaining local permissions, recruiting patients and collecting data this research programme would not have been possible.

  • NHS Ayrshire and Arran: Margo Henry (CRN).
  • Basildon and Thurrock University Hospitals NHS Foundation Trust: Gupta Indi (PI).
  • University Hospitals Birmingham NHS Foundation Trust: Prof Carol Dealey (PI), Lynne Ellocks (CRN) and Jeannette Marshall (CRN).
  • Bradford Teaching Hospitals NHS Foundation Trust: Kathryn Vowden (PI) and Janet McGowan (CRN).
  • Burton Hospitals NHS Foundation Trust: Linda Rafter (PI).
  • Calderdale and Huddersfield NHS Foundation Trust: Helen Fearnley (PI) and Catherine Smith (CRN).
  • County Durham Primary Care Trust and Darlington Primary Care Trust: Richard Buckland (PI).
  • Harrogate and District NHS Foundation Trust: Dr Alison Layton (PI) and Margaret Broome (CRN).
  • James Paget University Hospitals NHS Foundation Trust: Ingrid Salvery (PI) and Tina Dyble (CRN).
  • NHS Kirklees: Tracy Conroy (PI), Alison Murphy (TVNS), Geraldine Thompson (TVNS) and Jackie Ward (CRN).
  • NHS Leeds: Nikki Stubbs (PI), Lindsey Worstenholme (CRN), Karen Lamb (CRN), Rachael Lee (CRN) and Julie Thackrey (CRN).
  • Leeds Teaching Hospitals NHS Trust: Sally Blundell (CRN), Jimmy Choo (CRN), Andrea Dyer (TVNS), Elizabeth McGinnis (PI) and Kira Meethan (CRN).
  • University Hospitals of Leicester NHS Trust: Aiden Dunphy (CRN), Emma Alderman (CRN), Sandra Kazembe (CRN), Bianca Ngwenya (CRN) and Karen Wheafer (PI).
  • NHS Leicester County and Rutland Community Health Services: Lynne Spencer (PI).
  • Marie Curie Hospice: Jean Gordon (PI).
  • Mid Yorkshire Hospitals NHS Trust: Beverly Hemingway (CRN) and Caron Storey (CRN).
  • Norfolk and Norwich University Hospital: Helen May (PI) and Susanne McDonald (CRN).
  • Northern Devon Healthcare NHS Trust: Melanie Hucker (PI), Geraldine Belcher (CRN), Jane Hunt (CRN) and Amanda Skinner (CRN).
  • Northern Lincolnshire and Goole Hospitals NHS Foundation Trust: Helen Blagg (PI).
  • North Tees and Hartlepool Hospitals NHS Foundation Trust: Christine Russel (PI).
  • Northumbria Healthcare NHS Foundation Trust: Val Henderson (PI), Louise Jones (CRN) and Sean Phillips (CRN).
  • North Yorkshire and York NHS Trust: Joyce Simms (PI).
  • Scarborough and North East Yorkshire Healthcare NHS Trust: Samantha Haigh (PI).
  • Southern Health NHS Foundation Trust: Chantelle Mitchell (CRN).
  • South Tyneside NHS Foundation Trust: Jeannette Milne (PI).
  • Sussex Community NHS Trust: Claire Cox (PI), Kate Porter (CRN) and Nina Walters (CRN).
  • Wakefield Primary Care Trust: Joanne Newbald (PI) and Claire Brown (TVNS).

Complementary funding

  • TRANslating Science into Clinically Relevant Information for Pressure-ulcer Therapies and Risk-assessment (TranSCRIPTaR) Network. J Nixon, P Brooks, A Dehghani, JM Brown, E Andrea Nelson, C Gorecki, S Coleman, M Fader, D Bader, A Gefen, C Oomens, L Bilston, T Defloor, L Schoonhoven, D Berlowitz, D Margolis. Worldwide Universities Network, University of Leeds Fund for International Research Collaboration, £14,070 over 18 months. This funding enabled participation of international experts in the development of the pressure ulcer minimum dataset and Risk Assessment Framework (see Chapter 5).
  • Systematic reviews of pressure ulcer risk factors and patient quality of life. J Nixon. Postdoctoral Nursing Research Fellowship from the Smith & Nephew Foundation, £109,280.
  • The original work for the risk factor systematic review (see Chapter 5) was undertaken as part of the Smith & Nephew Foundation but was unpublished. The search was updated and the review methodology, evidence tables and narrative synthesis were developed and published as part of the programme grant.

Contributions of authors

Professor Jane Nixon (Professor of Tissue Viability and Clinical Trials Research) was the programme chief investigator and lead for the pain studies. She led the conception of the PURPOSE programme; contributed to the design, protocol development, protocol implementation and interpretation of data for the pain, severe pressure ulcer, risk assessment, PU-QOL and PUQOL-UI studies; and was involved in drafting Chapters 1, 3 and 8 and revising Chapters 2 and 4–7 critically for intellectual content. She also gave approval to the final version of the monograph and was the guarantor for Chapters 2, 3, 5 and 6.

Professor E Andrea Nelson (Professor of Wound Healing) was a programme co-applicant. She was involved in the conception of the PURPOSE programme; contributed to the design, protocol development, protocol implementation and interpretation of data for the pain, severe pressure ulcer, risk assessment and PU-QOL studies; and was involved in revising Chapters 1–8 critically for intellectual content. She also gave approval to the final version of the monograph.

Dr Claudia Rutherford (née Gorecki) (Research Fellow, Psychometrics) was a programme co-applicant. She was involved in the conception of and was the study lead for the PU-QOL studies including the design, protocol development, co-ordination of all approvals and acquisition of data, data analysis, data interpretation and drafting of Chapter 6; contributed to the design, protocol development, data acquisition and drafting of the risk factor systematic review (part of Chapter 5); and contributed to protocol development and interpretation of data for the PUQOL-UI study and revision of Chapter 7 critically for intellectual content. She was also involved in the co-ordination of the monograph and gave approval to the final version.

Dr Susanne Coleman (Programme Manager) was the study lead for the risk assessment studies including design, protocol development, co-ordination of approvals, acquisition of data and data analysis and interpretation and drafting of Chapter 5; contributed to the design, protocol development, protocol implementation and interpretation of data for the pain, severe pressure ulcer and PU-QOL studies; and contributed to the revision of Chapters 3, 4 and 6 critically for intellectual content. She also gave approval to the final version of the monograph.

Ms Delia Muir (Patient and Public Involvement Officer) was the PPI lead for all projects, set up and co-ordinated the Pressure Ulcer Service User Network UK (PURSUN UK), integrated service user involvement and drafted Chapter 2 and the PPI activity for all work packages (see Chapters 1, 3–8). She also gave approval to the final version of the monograph.

Professor Justin Keen (Professor of Health Politics) was a programme co-applicant. He was involved in the conception of and was the study lead for the severe pressure ulcer studies including design, protocol development, data analysis and data interpretation and drafting of Chapter 4. In addition, he contributed to the design, protocol development, protocol implementation and interpretation of data for the risk assessment study and the revision of Chapter 5 critically for intellectual content. He was the guarantor for Chapter 4 and gave approval to the final version of the monograph.

Professor Christopher McCabe (Professor of Health Economics) was a programme co-applicant. He was involved in the conception of and was the study lead for the PUQOL-UI studies including design, protocol development, protocol implementation, data analysis and data interpretation and the revision of Chapter 7 critically for intellectual content. He was the guarantor for Chapter 7 and gave approval to the final version of the monograph.

Professor Carol Dealey (Honorary Professor of Tissue Viability and Senior Nurse Researcher) was a programme co-applicant. She was involved in the conception of the PURPOSE programme; contributed to the design, protocol development, protocol implementation, local co-ordination of approvals and data acquisition for University Hospitals Birmingham NHS Foundation Trust for all work packages; was involved in the interpretation of data for Chapters 3–6; and was involved in revising Chapters 1–8 critically for intellectual content. She also gave approval to the final version of the monograph.

Professor Michelle Briggs (Professor of Nursing) was a programme co-applicant. She was involved in the conception of the PURPOSE programme; contributed to the design, protocol development, protocol implementation and interpretation of data for the pain study; contributed to drafting and revising of Chapter 3 critically for intellectual content; and contributed to the design, protocol development, protocol implementation, data analysis (systematic reviews) and interpretation of data for the PU-QOL study and the revision of Chapter 6 critically for intellectual content. She also gave approval to the final version of the monograph.

Ms Sarah Brown (Principal Medical Statistician) was involved in the design and supervision of the statistical analysis and interpretation of data for the pain cohort study and the Pressure Ulcer Risk Assessment Framework field test and contributed to drafting and revising Chapters 3 and 5 critically for intellectual content. She also gave approval to the final version of the monograph.

Mrs Michelle Collinson (Senior Medical Statistician) was involved in the design, statistical design and protocol development for all of the pain studies and the statistical analysis and interpretation of data for the two pain prevalence studies and contributed to drafting and revising Chapter 3 critically for intellectual content.

Professor Claire T Hulme (Professor of Health Economics) was involved in the design, protocol development, co-ordination of approvals, data acquisition, data analysis and data interpretation for the PUQOL-UI study and contributed to drafting and revising Chapter 7 critically for intellectual content. She also gave approval to the final version of the monograph.

Mr David M Meads (Lecturer in Health Economics) was involved in the design, protocol development, co-ordination of approvals, data acquisition, data analysis and data interpretation for the PUQOL-UI study and contributed to drafting and revising Chapter 7 critically for intellectual content. He also gave approval to the final version of the monograph.

Dr Elizabeth McGinnis (Tissue Viability Nurse Consultant) was a programme co-applicant. She was involved in the conception of the PURPOSE programme; contributed to the design, protocol development, protocol implementation and local co-ordination of approvals and data acquisition for Leeds Teaching Hospitals NHS Trust for all work packages; was involved in the interpretation of data for and contributed to the drafting of Chapters 2–7 critically for intellectual content. She also gave approval to the final version of the monograph.

Dr Malcolm Patterson (Senior Research Fellow) was involved in the design, data analysis and data interpretation from an organisational psychology perspective for the severe pressure ulcer study and contributed to drafting and revising Chapter 4 critically for intellectual content. He also gave approval to the final version of the monograph.

Ms Carolyn Czoski-Murray (Research Fellow, Health Economics) was involved in the design, protocol development, co-ordination of approvals, data acquisition, data analysis and data interpretation for the PUQOL-UI study and contributed to drafting and revising Chapter 7 critically for intellectual content. She also gave approval to the final version of the monograph.

Ms Lisa Pinkney (Research Officer) was involved in the design, protocol development, co-ordination of approvals, data acquisition and all field work, data analysis and data interpretation for the severe pressure ulcer study and contributed to drafting and revising Chapter 4 critically for intellectual content. She also gave approval to the final version of the monograph.

Ms Isabelle L Smith (Medical Statistician) was involved in the statistical design and analysis and interpretation of data for the pain cohort study and the Pressure Ulcer Risk Assessment Framework field test and contributed to drafting and revising of Chapters 3 and 5 critically for intellectual content. She also gave approval of the final version to the monograph.

Dr Rebecca Stevenson (Trial Co-ordinator and Medical Student) was involved in protocol development, co-ordination of approvals, case report forms and database design, co-ordination of data acquisition and interpretation of analysis for the pain study, was the lead for the community prevalence substudy analysis and contributed to drafting and revising Chapter 3 critically for intellectual content. She also gave approval to the final version of the monograph.

Mrs Nikki Stubbs (Tissue Viability Nurse Specialist) was a programme co-applicant. She was involved in the conception of the PURPOSE programme; contributed to the design, protocol development, protocol implementation, local co-ordination of approvals and data acquisition for Leeds Community Healthcare NHS Trust for all work packages; and was involved in the interpretation of data for and the revision of Chapters 2–7 critically for intellectual content. She also gave approval to the final version of the monograph.

Mrs Lyn Wilson (Programme Manager and Tissue Viability Nurse Specialist) contributed to the design, protocol development, protocol implementation and central co-ordination of approvals and centre set-up for all studies; was involved in the local co-ordination of approvals and data acquisition for Mid Yorkshire Hospitals NHS Trust; and was involved in the interpretation of data for and the revision of Chapters 2–7 critically for intellectual content. She also gave approval of the final version to the monograph.

Professor Julia M Brown (Professor of Clinical Trials Research) was a programme co-applicant. She was involved in the conception of the PURPOSE programme; contributed to the design, protocol development, protocol implementation and interpretation of data for the pain, risk assessment and PU-QOL studies; and contributed to the revision of Chapters 3, 5 and 6 critically for intellectual content. She also gave approval to the final version of the monograph.

Publications

Chapter 2

Muir D. Patient and public involvement in pressure ulcer research. J Tissue Viability 2011;20:132–3.

Muir D. The Pressure Ulcer Research Service User Network UK (PURSUN UK). Eur Wounds Manag Assoc J 2011;11:26.

Coleman S, Muir D, Rawson B and Rawson Y. Patient involvement in risk tool development. Nursing Times 2015;111:17–19.

Chapter 3

Briggs M, Collinson M, Wilson L, Rivers C, McGinnis E, Dealey C, et al. The prevalence of pain at pressure areas and pressure ulcers in hospitalised patients. BMC Nurs 2013;12:19.

Stevenson R, Collinson M, Henderson V, Wilson L, Dealey C, McGinnis E, et al. The prevalence of pressure ulcers in community settings: an observational study. Int J Nurs Stud 2013;50:1550–7.

McGinnis E, Briggs M, Collinson M, Wilson L, Dealey C, Brown J, et al. Pressure ulcer related pain in community populations: a prevalence survey. BMC Nurs 2014;13:16.

Chapter 4

Keen J. Normal accidents: learning how to learn about safety. In Exworthy M, Powell M, Peckham S, Hann A, editors. Shaping Health Policy: Case Study Methods and Analysis. Bristol: Policy Press; 2011. pp. 107–18.

Pinkney L, Nixon J, Wilson L, McGinnis E, Stubbs N, Dealey C, et al. Why do patients develop severe pressure ulcers? A retrospective case study. BMJ Open 2014;4:e004303.

Chapter 5

Coleman S, Gorecki C, Nelson EA, Closs J, Defloor T, Halfens R, et al. Patient risk factors for pressure ulcer development: a systematic review. Int J Nurs 2013;50:974–1003.

Coleman S, Nixon J, Keen J, Wilson L, McGinnis E, Dealey C, et al. A new pressure ulcer conceptual framework. J Adv Nurs 2014;70:2222–34.

Coleman S, Nelson EA, Keen J, Wilson L, McGinnis E, Dealey C, et al. Developing a pressure ulcer risk factor minimum data set and risk assessment framework. J Adv Nurs 2014;70:2339–52.

Chapter 6

Gorecki CA, Brown JM, Briggs M, Nixon J. The evaluation of 5 search strategies in retrieving qualitative patient-reported electronic data of the impact of pressure ulcers on quality of life. J Adv Nurs 2010;66:645–52.

Gorecki CA, Lamping DL, Brown JM, Madill A, Firth J, Nixon J. Development of a conceptual framework of health-related quality of life in pressure ulcers: a patient focused approach. Int J Nurs Stud 2010;47:1525–34.

Gorecki C, Closs J, Nixon J, Briggs M. Patient-reported pressure ulcer pain: a mixed methods systematic review. J Pain Symptom Manage 2011;42:443–59.

Gorecki C, Lamping D, Nixon J, Brown J, Cano S. Applying mixed methods to pre-test the Pressure Ulcer Quality of Life (PU-QOL) instrument. Qual Life Res J 2012;21:441–51.

Gorecki C, Nixon J, Madill A, Firth J, Brown J. What influences the impact of pressure ulcers on health-related quality of life? A qualitative patient-focused exploration of contributory factors. J Tissue Viability 2012;21:3–12.

Gorecki C, Brown J, Cano S, Lamping D, Briggs M, Coleman S, et al. Development and validation of a new patient-reported outcome measure for patients with pressure ulcers: the PU-QOL instrument. Health Qual Life Outcomes 2013;11:95.

Gorecki C, Nixon J, Lamping D, Alvari Y, Brown J. Patient-reported outcome measures for chronic wounds with particular reference to pressure ulcer research: a systematic review. Int J Nurs Stud 2014;51:157–65.

Rutherford C, Nixon J, Brown JM, Lamping DL, Cano SJ. Using mixed methods to select optimal mode of administration for a patient-reported outcome instrument for people with pressure ulcers. BMC Med Res Methodol 2014;14:22.

Overall programme

Nixon J, Wilson LM, Coleman S, Gorecki C, Muir D, Pinkney L, et al. Pressure ulcer programme of research – PURPOSE. Eur Wounds Manag Assoc J 2012;12:21–4.

Research nurses

Choo J, Blundell S, McGinnis E. Ethical issues and challenges in pressure ulcer research – the research nurses’ perspective. J Tissue Viability 2012;21:105–8.

Hemingway B, Storey C. The experience of two registered nurses adapting to the role of a clinical research nurse. Nurs Stand 2013;27:62–8.

Theses

Gorecki CA. The Development and Validation of a Patient-Reported Outcome Measure of Health-Related Quality of Life for Patients with Pressure Ulcers: PUQOL Project. PhD thesis. Leeds: University of Leeds; 2011.

Coleman SB. The Development of a Pressure Ulcer Risk Assessment Framework and Minimum Data Set. PhD thesis. Leeds: University of Leeds; 2014.

Fell JS. A Secondary Analysis of Pain Presentation and Analgesic Use in the PURPOSE Pressure Ulcer Cohort Study. MSc thesis. Leeds: University of Leeds; 2014.

List of presentations and posters

Chapter 2

Muir D, Nixon J. A different type of expertise; patient and public involvement in pressure ulcer research. 14th Annual EPUAP Conference, Oporto, Portugal, September 2011 (oral presentation).

Muir D, McGoverin A, Rawson B. The Pressure Ulcer Research Service User Network. PURPOSE Principal Investigators Training Day, Leeds, UK, December 2011 (oral presentation).

Muir D, Bennett C. Pressure ulcer patient stories. Tissue Viability Society Conference, Kettering, UK, April 2012 (oral presentation, invited speaker).

Muir D, Bell P, Bennett C, Pickersgill A, Rawson Y, Rawson B, et al. Patient and public involvement in pressure ulcer research: lessons learnt and next steps. Tissue Viability Society Conference, Kettering, UK, April 2012 (oral presentation).

Muir D, Pinkney L, McGoverin A, Parker S. Performing an enquiry: an innovative model for involving people in the interpretation of research data. INVOLVE Conference, Nottingham, UK, November 2012 (workshop).

Muir D. Bringing research to life: involving service users in the severe pressure ulcer project. Tissue Viability Society Conference, Kettering, UK, April 2013 (poster presentation).

Muir D. Bringing research to life: involving service users in the severe pressure ulcer project. Involving People Annual Meeting, Cardiff, UK, March 2013 (poster presentation).

Muir D, Rawson B, Rawson Y. Living with a pressure ulcer – a patient and carer perspective. Stop the Pressure Student Conference, Lincoln, UK, October 2013 (oral presentation, invited speaker).

Chapter 3

Nixon J, Wilson L, on behalf of the PURPOSE Project Team. Pressure ulcer pain suffering: issues raised in a multi-centre prevalence. 13th EPUAP Open Meeting, Birmingham, UK, September 2010 (oral presentation, invited speaker).

Nixon J, on behalf of the PURPOSE Project Team. Understanding prevalence of localized pressure ulcer related pain. Tissue Viability Society Conference, Kettering, UK, April 2011 (oral presentation, invited speaker).

Nixon J, on behalf of the PURPOSE Pain Team. Pressure ulcer pain prevalence in community populations: prevalence survey. 14th Annual EPUAP Conference, Oporto, Portugal, September 2011 (oral presentation).

Briggs M, on behalf of the PURPOSE Project Team. The prevalence of pain and pressure ulcers in hospitalized patients; results of a national survey. British Pain Society Annual Scientific Meeting, Liverpool, UK, April 2012 (poster; awarded best poster prize).

Stevenson R, Collinson M, Henderson V, Cozens J, Nixon J. Pressure ulcers in the community: a multicentre prevalence study. 15th Annual EPUAP Conference, Cardiff, UK, September 2012 (oral presentation; winner of the student oral competition).

Nixon J, on behalf of the PURPOSE Pain Team. The prevalence of pressure area and pressure ulcer pain in hospitalised patients. 13th NPUAP Biennial Conference, Houston, TX, USA, February 2013 (poster presentation).

McGinnis E, Nixon J, Briggs M, Collinson M, Wilson L, Rivers C, et al. Prevalence of pressure ulcer pain in community patients. 13th NPUAP Biennial Conference, Houston, TX, USA, February 2013 (poster presentation).

Nixon J. Is pain a predictor of category 2 pressure ulcers? Results of the PURPOSE Pain Cohort Study. Tissue Viability Society Conference, Kettering, UK, April 2013 (oral presentation, invited speaker).

Nixon J, Smith I, Brown S, Nelson EA, McGinnis E, Stubbs N, et al., on behalf of the PURPOSE Pain Cohort Group. Is pain a predictor of category 2 pressure ulcers? Results of the PURPOSE Pain Cohort Study. 16th Annual EPUAP Conference, Vienna, Austria, September 2013 (oral presentation).

Muir D, Briggs M, McGinnis E and Nixon N. Pain and pressure ulcer development: the service user perspective. TVS Conference, York, 2014 (oral presentation).

Nixon J, Smith I. Is pain a predictor of Category 2 pressure ulcers? Analysis of skin site level data from the PURPOSE Pain Cohort Study, TVS Annual Conference, York, April 2014 (oral presentation).

Smith I, Brown S, McGinnis E, Stubbs N, Nixon J on behalf of the PURPOSE Pain Cohort Group. Is pain a predictor of Category 2 pressure ulcers? Analysis of skin site level data from the PURPOSE Pain Cohort Study, 17th EPUAP Meeting, Stockholm, August 2014 (oral presentation).

Smith I, Brown S, McGinnis E, Stubbs N, Nixon J on behalf of the PURPOSE Pain Cohort Group. What is the extent of pain suffering, and is pain predictive of pressure ulcer development? 25th Conference of the European Wound Management Association, London, May 2015 (oral presentation, invited speaker).

Chapter 4

Pinkney L, Keen J, Nixon J. Why do patients develop severe pressure ulcers? Leeds Institute of Health Sciences Research Postgraduate Symposium, Leeds, UK, June 2010 (oral presentation).

Pinkney L, Keen J, Nixon J. Why do patients develop severe pressure ulcers? BMJ International Forum on Quality and Safety in Healthcare, Amsterdam, Netherlands, April 2011 (poster presentation).

Pinkney L, on behalf of the Severe Pressure Ulcer Project Team. Do organizations cause pressure ulcers? An exploratory review. 14th Annual EPUAP Conference, Oporto, Portugal, September 2011 (oral presentation).

Keen J, on behalf of the Severe Pressure Ulcer Project Team. Severe pressure ulcers: how organisational contexts influence their development. Tissue Viability Society Conference, Kettering, UK, April 2013 (oral presentation).

Dealey C, Keen K, Nixon J, on behalf of the Severe Pressure Ulcer Project Team. Why do patients develop severe pressure ulcers? 16th Annual EPUAP Conference, Vienna, Austria, September 2013 (oral presentation).

Keen J. Why do patients develop severe pressure ulcers? EWMA, London, May 2015 (oral presentation).

Chapter 5

Coleman S, Nixon J, Gorecki C, Nelson EA, on behalf of the PURE Collaborative Group. A systematic review of pressure ulcer risk factors. 14th Annual EPUAP Conference, Oporto, Portugal, September 2011 (oral presentation).

Coleman S, Wilson L, on behalf of the PURAF Project Team. Pressure ulcer risk assessment. Building Blocks of Wound Care Conference North East Tissue Viability Nurses Regional Group, Leeds, UK, September 2011 (oral presentation, invited speaker).

Coleman S. The development of pressure ulcer minimum data set (PU-MDS) using consensus methods. Postgraduate Research Conference, Leeds, UK, December 2012 (oral presentation)

Colman S, on behalf of the PURAF Project Team. Systematic review of pressure ulcer risk factors. 13th NPUAP Biennial Conference, Houston, TX, USA, February 2013 (poster presentation).

Coleman S. From systematic review to clinical practice – risk factor domains to be considered in pressure ulcer risk assessment. Tissue Viability Society Conference, Kettering, UK, April 2013 (oral presentation, invited speaker).

Coleman S, Nixon J, Nelson EA, Farrin A, on behalf of the PURAF Study Group. From systematic review to clinical practice: using consensus methods to develop a Pressure Ulcer Risk Assessment Framework (PURAF). 16th Annual EPUAP Conference, Vienna, Austria, September 2013 (oral presentation).

Coleman S, Nixon J, Nelson EA, Farrin A, on behalf of the PURAF Study Group. The design and pre-testing of a Pressure Ulcer Risk Assessment Framework (PURAF). 16th Annual EPUAP Conference, Vienna, Austria, September 2013 (oral presentation).

Coleman S, Stubbs N, McGinnis E and Nixon J on behalf of the PUPPs and PURPOSE T Implementation Team. Pressure Ulcer Prevention Pathways (PUPPs) and Pressure Ulcer Risk Primary Or Secondary Evaluation Tool (PURPOSE T). TVS, York, April 2014 (workshop).

Coleman S and Nixon J. Translational gap: measuring risk factors in clinical practice, 2nd EPUAP Focus Meeting on Skin Health and Microclimate. Southampton, April 2014, (oral presentation, invited speaker).

Nixon J and Coleman S. Pressure ulcer recognition and prevention: the value of risk assessment. Stop the pressure student conference, Leeds, June 2014 (oral presentation, invited speaker).

Coleman S and Nixon J on behalf of the PUPPs and PURPOSE T Implementation Team. Active monitoring model of care incorporating PURPOSE T Workshop, 17th EPUAP Meeting, Stockholm, Aug 2014 (oral presentation, invited speaker).

Coleman S on behalf of the PURPOSE RAF Project Team. Risk factors in context: from conceptual framework to risk assessment in practice, 17th EPUAP Meeting, Stockholm, August 2014 (oral presentation, invited speaker).

Coleman S. The development of PURPOSE T. Pressure ulcer research: dissemination and implementation conference, Leeds, February 2015 (oral presentation, invited speaker).

Coleman S behalf of the PUPPs and PURPOSE T Implementation Team. PURPOSE T Master Class. Academic Health Science Network, Patient Safety Collaborative: Pressure Damage learning collaborative, Sussex, May 2015 (workshop, invited speaker).

Coleman S and McGinnis E on behalf of the PUPPs and PURPOSE T Implementation Team. Evidenced-based pressure ulcer risk assessment and implementation in clinical practice. EWMA 2015, London, May 2015 (workshop).

Coleman S, Muir D, Rawson B and Rawson Y. Involving patients in pressure ulcer prevention. Patient Safety Congress, Birmingham, July 2015 (oral presentation).

Nixon J and Coleman S, Translation of pressure ulcer risk factor research into practice. Posture and Mobility Group Conference, Leeds, July 2015 (oral presentation, invited speaker).

Chapter 6

Gorecki C, Brown J, Nelson EA, Briggs M, Dealey C, Schoonhoven L, et al. A systematic review of pressure ulcers and quality of life. EPUAP Open Meeting, Oxford, UK, August 2007 (oral presentation).

Gorecki C, Brown J, Nelson EA, Briggs M, Dealey C, Schoonhoven L, et al. A systematic review of pressure ulcers and quality of life. 14th Annual Conference of the International Society of Quality of Life, Toronto, Canada, October 2007 (poster presentation).

Gorecki C, Brown J, Briggs M, Nixon J. Evaluation of 5 search strategies to locate subjective patient-reported HRQoL data. 14th Annual Conference of the International Society of Quality of Life, Toronto, Canada, October 2007 (poster presentation).

Gorecki C, Brown J, Lamping D, Nelson EA, Briggs M, Dealey C, et al. Pressure ulcers and quality of life: systematic review and preliminary results from a qualitative study. Tissue Viability Society Annual Conference, Peterborough, UK, April 2008 (oral presentation, invited speaker).

Gorecki C, on behalf of the PUQOL Project Team. Existing outcome measures used in pressure ulcers. 12th Annual EPUAP Open Meeting, Amsterdam, the Netherlands, September 2009 (oral presentation).

Gorecki C, Brown J, Lamping D, Madill A, Firth J, Nixon J, on behalf of the PUQOL Project Team. Health-related quality of life in pressure ulceration: development of a conceptual framework. 16th Annual Conference of the International Society for Quality of Life Research, New Orleans, LA, USA, October 2009 (oral presentation).

Gorecki C, Brown J, Lamping D, Nixon J. Using cognitive interviewing to improve a newly developed health-related quality of life patient-reported outcome for people with pressure ulcers. 16th Annual Conference of the International Society for Quality of Life Research, New Orleans, LA, USA, October 2009 (poster presentation).

Gorecki C, Closs J, Nixon J, Briggs M. Patient-reported pressure ulcer-associated pain: a mixed-methods systematic review. British Pain Society Annual Scientific Meeting, Manchester, UK, April 2010 (poster presentation).

Briggs M, Gorecki C, Nixon J, Closs SJ. Words used to describe pressure ulcer pain: the results of a systematic review and qualitative synthesis. 13th EPUAP Open Meeting, Birmingham, UK, September 2010 (oral presentation).

Gorecki C. EPUAP Novice Award Lecture 2010. What constitutes health-related quality of life in pressure ulcers and how do we measure it? 13th EPUAP Open Meeting, Birmingham, UK, September 2010 (oral presentation, invited speaker).

Gorecki C, Lamping DL, Nixon J, Brown J, Cano S. The benefits of mixed methods in scale development I: the added value of Rasch analysis in pre-testing. 17th Annual Conference of the International Society for Quality of Life Research, London, UK, October 2010 (poster presentation).

Gorecki C, Nixon J, Lamping DL, Brown J, Cano S. The benefits of mixed methods in scale development II: selecting optimal mode of administration. 17th Annual Conference of the International Society for Quality of Life Research, London, UK, October 2010 (oral presentation, invited speaker).

Firth J, Briggs M, Nelson EA, Gorecki C. Health-related quality of life in patients with rheumatoid arthritis and foot ulceration: care pathways and experiences of care provision. British Health Professionals in Rheumatology Conference, Brighton, UK, April 2011 (poster presentation).

Gorecki C. Challenges in measuring HRQoL in pressure ulcers: development of a PRO measure. Tissue Viability Society Conference, Kettering, UK, April 2011 (oral presentation).

Claudia Gorecki. Development of a patient-reported outcome measure: impact of pressure ulcers on HRQoL. Royal College of Nursing International Conference, Harrogate, UK, May 2011 (oral presentation).

Briggs M, Firth J, Nelson EA, Gorecki, C. Pain and foot ulceration in rheumatoid arthritis; how do patients describe the experience? British Pain Society Annual Conference, Edinburgh, UK, June 2011 (oral presentation).

Gorecki C. Application of mixed methods in early rating scale development. International Rasch Expert Group Meeting, Dubrovnik, Croatia, June 2011 (oral presentation, invited speaker).

Gorecki C, Nixon J, on behalf of the PUQOL Project Team. PU-QOL: a patient-reported outcome measure of health-related quality of life for patients with pressure ulcers. 14th Annual EPUAP Conference, Oporto, Portugal, September 2011 (oral presentation).

Nelson EA, Nixon J, Coleman S, Gorecki C. Pressure ulcer epidemiology, pain and quality of life. 4th Congress of the World Union of Wound Healing Societies, Yokohama, Japan, September 2012 (oral presentation).

Nixon J, Gorecki C, on behalf of the PUQOL Project Team. Final version of a patient-reported outcome measure of health-related quality of life for patients with pressure ulcers (PUQOL). 13th NPUAP National Biennial Conference, Houston, TX, USA, February 2013 (poster presentation).

Rutherford C on behalf of the PUQOL project team. A patient-reported outcome measure of health-related quality of life for patients with pressure ulcers: the PU-QOL instrument. The 4th Australasian Wound and Tissue Repair Society Conference, Queensland, Australia, May 2014 (oral presentation).

Chapter 7

Czoski-Murray C, Meads D, Edlin R, Hulme C, Gorecki C, Nixon J, et al. Constructing a utility algorithm for the Pressure Ulcer Quality of Life – Utility Instrument (PuQol-UI). TVS conference, York, April 2014 (oral presentation).

Overall programme

Nixon J, on behalf of the PURPOSE Collaborative Group. Pressure UlceR Programme Of ReSEarch. Tissue Viability Society Annual Conference, Llandudno, UK, April 2009 (oral presentation).

Nixon J, Keen J, McCabe C, Nelson A, Dealey C, Briggs M, et al. PURPOSE – Pressure UlceR Programme Of reSEarch. Nursing and Midwifery Conference, Leeds, UK, May 2009 (poster presentation).

Nixon J, on behalf of the PURPOSE Collaborative Group. Pressure UlceR Programme Of ReSEarch. Yorkshire and the Humber Directors of Nursing Network Meeting, York, UK, June 2009 (oral presentation).

Nixon J, on behalf of the PURPOSE Collaborative Group. Pressure UlceR Programme Of ReSEarch. A Practical Guide to Reducing Healthcare Associated Pressure Ulcers, Manchester, UK, July 2009 (oral presentation, invited speaker).

Wilson L, Coleman S, on behalf of the PURPOSE Collaborative Group. Pressure UlceR Programme Of reSEarch (PURPOSE). Wounds UK 2009 Wound Care Conference, Harrogate, UK, November 2009 (oral presentation).

Nixon J Wilson L, Coleman S Gorecki C Nelson A, on behalf of the PURPOSE team. Pressure UlceR Programme Of reSEarch (PURPOSE). 13th EPUAP Open Meeting, Birmingham, UK, September 2010 (poster presentation).

Muir D, Nixon J, on behalf of the PURPOSE team. A different type of expertise; patient and public involvement in pressure ulcer research. Royal College of Nursing International Nursing Research Conference, Harrogate, UK, May 2011 (Symposium: programmatic research in pressure ulcer prevention; update on progress and how we are addressing challenges).

Nelson EA, Coleman S, Nixon J, on behalf of the PURPOSE team. Challenges in identifying risk factors for pressure ulceration: systematic review of risk factors and problems addressed. Royal College of Nursing International Nursing Research Conference, Harrogate, UK, May 2011 (Symposium: programmatic research in pressure ulcer prevention; update on progress and how we are addressing challenges).

Nixon J, on behalf of the PURPOSE Pain Team. Pressure ulcer pain suffering: issues raised in a multi-centre pain prevalence study. Royal College of Nursing International Nursing Research Conference, Harrogate, UK, May 2011 (Symposium: programmatic research in pressure ulcer prevention; update on progress and how we are addressing challenges)

Nixon J, Wilson L, Coleman S, Gorecki C, Nelson EA, on behalf of the PURPOSE team. Pressure UlceR Programme Of reSEarch – PURPOSE. Royal College of Nursing International Nursing Research Conference, Harrogate, UK, May 2011 (Symposium: programmatic research in pressure ulcer prevention; update on progress and how we are addressing challenges)

Nixon J, Choo J, McGinnis E, Nelson EA, on behalf of the PURPOSE team. Pressure UlceR Programme Of reSEarch (PURPOSE). 2nd International Nursing Research Conference, University of Malaya, Malaysia, February 2012 (poster presentation).

Nelson EA, Nixon J, Coleman S, Gorecki C. Pressure ulcer epidemiology, pain and quality of life. 4th Congress of the World Union of Wound Healing Societies, Yokohama, Japan, September 2012 (oral presentation).

Wilson L. High impact actions – PURPOSE. E4E Conference, Mid Yorkshire Hospitals NHS Trust, UK, September 2012 (oral presentation).

McGinnis E, Stubbs N, Coleman S, Muir D, Ginn C, Hinchcliffe S, Nixon J. Pressure ulcer research: dissemination and implementation conference, LGI, Leeds, 5 February 2015 (oral presentation).

Research nurses

Storey C, Hemingway B. Reflections on the clinical research nurse role. Tissue Viability Society Conference, Kettering, UK, April 2011 (poster presentation; awarded best poster prize).

Choo J, Blundell S, McGinnis E. Ethical issues and challenges in pressure ulcer research – the research nurses’ perspective. Tissue Viability Society Conference, Kettering, UK, April 2012 (poster presentation).

Awards

  • EPUAP Senior Investigator Award 2012 – Professor Carol Dealey.
  • EPUAP Novice Investigator Award 2010 – Dr Claudia Rutherford (née Gorecki).
  • Poster prize – Storey C, Hemingway B. Reflections on the clinical research nurse role. Tissue Viability Society Conference, Kettering, April 2011.
  • Poster prize – Briggs M, on behalf of the Project Team. The prevalence of pain and pressure ulcers in hospitalized patients; results of a national survey. British Pain Society Annual Scientific Meeting, Liverpool, April 2012.
  • Student oral competition – Stevenson R, Collinson M, Henderson V, Cozens J, Nixon J. Pressure ulcers in the community: a multicentre prevalence study. 15th Annual EPUAP Conference, Cardiff, September 2012.
  • Poster prize – McGinnis E, Nixon J, Briggs M, Collinson M, Wilson L, Rivers C, et al. Prevalence of pressure ulcer pain in community patients. 13th NPUAP National Biennial Conference, Houston, TX, USA, February 2013.

Data sharing statement

Requests for data should be made to the corresponding author.

Disclaimers

This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, CCF, NETSCC, PGfAR or the Department of Health. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, NETSCC, the PGfAR programme or the Department of Health.

Copyright © Queen’s Printer and Controller of HMSO 2015. This work was produced by Nixon et al. under the terms of a commissioning contract issued by the Secretary of State for Health. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK.

Included under terms of UK Non-commercial Government License.

Bookshelf ID: NBK321102
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