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MORECare - Methods for evaluating service delivery models for end of life care (EoLC): development of best practice guidance

* Funded by the UK Medical Research Council (MRC) and National Institutes of Health Research (NIHR)

Best practice to develop and evaluate models of service delivery and complex interventions in palliative and end of life care.

Despite being a core business of medicine, end of life care (EoLC) is neglected. It is hampered by research that is difficult to conduct with no common standards. We aimed to develop evidence-based guidance on the best methods for the design and conduct of research on EoLC to further knowledge in the field.

MORECare built on the Medical Research Council guidance on the development and evaluation of complex interventions. We conducted systematic literature reviews, transparent expert consultations (TEC) involving consensus methods of nominal group and online voting, and stakeholder workshops to identify challenges and best practice in EoLC research, including: participation recruitment, ethics, attrition, integration of mixed methods, complex outcomes and economic evaluation.

We synthesised all findings to develop a guidance statement – the MORECare statement on the best methods to research EoLC. The statement provides a first step in setting common, much needed standards for evaluative research in EoLC and may be used alongside existing statements for reporting studies. The statement is relevant to those undertaking research, trainee researchers, research funders, ethical committees and editors.

The statement provides 36 best practice solutions for research evaluating services and treatments in EoLC to improve study quality and set the standard for future research.

Key Recommendations
  1. It is ethically desirable for patients and families in EoLC to be offered involvement in research
  2. High rates of attrition should be assumed. A study with limited attrition due to death or worsening illness may justifiably be criticised for recruiting the wrong patients
  3. Use the MORECARE classification of attrition to describe causes of attrition: that is,
    • ADD – attrition due to death;
    • ADI - attrition due to illness;
    • AaR - attrition at random
  4. The properties of the best outcome measure be responsive to change over time and capture clinically important data
  5. Seek to amend the law in England regarding consent so that advance consent for studies other than clinical trials of medicinal products is legally effective.

MORECare statement

36 best practice solutions to develop and evaluate complex interventions in palliative and EoLC. [Link to Paper]

Methods Review

MRC guidance on developing and evaluating complex interventions (NIHR School for Social Care Research Methods Review): Application to research on palliative and end of life care. [Link to full Review]

Reference

Evans C, Stone K, Manthorpe J, Higginson I (2014) MRC Guidance on Developing and Evaluating Complex Interventions: Application to Research on Palliative and End of Life Care, SSCR Methods Review 15, NIHR School for Social Care Research, London.

aSystematic reviews

  • Participation in EoLC research [Link to Paper]
  • ‘Best practice’ to develop and evaluate palliative and EoLC services [Link to PubMed]
  • What is the evidence that palliative care teams improve outcomes for cancer patients and their families? [Link to PubMed]

bFurther guidance on specific topics

MORECare Elearning

We have developped a short e-learning course based on MORECare research findings. The course registration is now open. Read more

For more information or questions, please contact Hamid Benalia.

We would like to thank the workshop participants for their time and contributions to developing the guidance statement.

Workshop participants

Ethics Workshop
Bobbie Farsides, Margaret Holloway, Suzanne Shale, Barbara Monroe, Rob George, Will Bowen, Peter Speck, Diana Jackson, Katrien Moens, Barbara Antunes, Hazel Biggs, Andrew Thorns, Barbara Gomes, Sue Hall

Health Economics Workshop
Karen Gerard, Rachel Baker, Joanna Coast, Will Hollingworth, Paul Mccrone, Steve Dewar, Sandy Tubeuf, Alan Haycox, Barbara Hanratty, Hareth Al-Janabi, Rosa Orlando, Claire Hulme, Hristina Petkova, Eugene Murray, Rachel Houten, Aki Tsuchiya, Barb Daveson, Barbara Gomes, Iris Groeneveld, Yvonne Kaloki

Research Partner Workshop
Kuzna Jackson, Christine Coates, Jan Loudon, Pauline Turnbull, Mrs Stannard, Joan Robertson, Len Leeder, Beryl Wade, Jane Wells, Janet Hall, Irene McGill, Daisy Lussier, Bert Green, M.J. Kyffin, Gail Capstick, David Pedder, Jill Robinson

Outcome measurement Workshop
Amy Abernethy, Claudia Bausewein, Mike Bennett, Eduardo Bruera, Augusto Caraceni, Nathan Cherny, Vito Curiale, David Currow , Barb Daveson, Luc Deliens, Anneke L Francke, Richard Harding, Stein Kaasa, Joan Marston, Geoff Mitchell, Josep Porta-Sales, Florian Strasser

Statistics Workshop
Peter Fayers, Irene McGill, Matther Hotopf, Mike Campbell, Mark Piling, Julia Brown, Yuen King Ho, Christina Ramsenthaler, Stephen Walters, Ivonne Solis-Trapala, Mike Bradburn, Claudia Bausewein, Andrew Pickles Stakeholder Consulation : Susan Heatley, Julie Bills, Dai Roberts, Kay Greene, Lesley Dunleavy, Adam Firth, Christina Ireland, Bev Melia, Wendy Johnson, Sarah Lake, Josie Candlin, Maurice Philips

Mixed Methods Workshop
Domhnall MacAuley, Bridget Candy, Joy Adamson, Kate Flemming, Suzanne Moffatt, Julia Brannen, Marilyn Kendall, Jonathan Koffman, Louise Jones, Bill Noble, Rona Campbell, Gail Ewing, Katherine Froggatt, Nick Mays, Eleni Epiphaniou, Sue Hall, Despina Anagnostou, Marion McAllister, Anne Rogers, Simon Lewin

The Methods Of Researching End of Life Care (MORECare) is a collaboration between:

  • King’s College London
  • University of Manchester
  • University of Edinburgh
  • University of Aberdeen
  • UK Medical Research Council (MRC)
  • National Institutes of Health Research (NIHR)
Acknowledgements

MORECare was funded by the NIHR and managed by the MRC as part of the Methodology Research Programme (MRP) (number: G0802654/1). MORECare aimed to identify, appraise and synthesise ‘best practice’ methods to develop and evaluate palliative and EoLC, particularly focusing on complex service-delivery interventions and reconfigurations.

  • Principal investigator: Irene J Higginson
  • Co-principal investigator: Chris Todd

The members of MORECare are:

  • Co-investigators
    • Peter Fayers
    • Gunn Grande
    • Richard Harding
    • Matthew Hotopf
    • Penney Lewis
    • Paul McCrone
    • Scott Murray
    • Myfanwy Morgan
  • Project advisory group
    • Massimo Costantini
    • Steve Dewar
    • John Ellershaw
    • Claire Henry
    • William Hollingworth
    • Philip Hurst
    • Tessa Ing
    • Karl Lorenz
    • Rajan Madhok
    • Jane Maher
    • Irene McGill
    • Elizabeth Murray
    • Ann Netten
    • Alicia O'Cathain
    • Sheila Payne
    • Roland Petchey
    • Wendy Prentice
    • Deborah Tanner
    • Celia A Taylor
  • Researchers
    • Hamid Benalia
    • Catherine J Evans
    • Marjolein Gysels
    • Nancy J Preston
    • Vicky Short

Morag Farquhar was supported by a Macmillan Cancer Support Post-Doctoral Fellowship.

Irene J Higginson is an NIHR Senior Investigator.

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