Evaluating complex interventions in End of Life Care: The MORECare Statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews

Irene J. Higginson* (Corresponding Author), Catherine J. Evans (Corresponding Author), Gunn Grande, Nancy Preston, Myfanwy Morgan, Paul McCrone, Penney Lewis, Peter Fayers, Richard Harding, Matthew Hotopf, Scott A. Murray, Hamid Benalia, Marjolein Gysels, Morag Farquhar, Chris Todd

*Corresponding author for this work

Research output: Contribution to journalArticle

130 Citations (Scopus)
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Abstract

Background: 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.Methods: The Methods Of Researching End of life Care (MORECare) project built on the Medical Research Council guidance on the development and evaluation of complex circumstances. 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 on the best methods to research EoLC.Results: We integrated data from three systematic reviews and five TECs with 133 online responses. We recommend research designs extending beyond randomised trials and encompassing mixed methods. Patients and families value participation in research, and consumer or patient collaboration in developing studies can resolve some ethical concerns. It is ethically desirable to offer patients and families the opportunity to participate in research. Outcome measures should be short, responsive to change and ideally used for both clinical practice and research. Attrition should be anticipated in studies and may affirm inclusion of the relevant population, but careful reporting is necessitated using a new classification. Eventual implementation requires consideration at all stages of the project.Conclusions: The MORECare 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. The statement may be used alongside existing statements and provides a first step in setting common, much needed standards for evaluative research in EoLC. These are relevant to those undertaking research, trainee researchers, research funders, ethical committees and editors.

Original languageEnglish
Article number111
Number of pages11
JournalBMC medicine
Volume11
Issue number1
DOIs
Publication statusPublished - 24 Apr 2013

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Terminal Care
Referral and Consultation
Research
Practice Guidelines
Research Design
Politics
Ethics
Cost-Benefit Analysis
Biomedical Research
Consensus
Research Personnel
Medicine
Outcome Assessment (Health Care)
Education

Keywords

  • Consensus
  • Evaluation studies
  • Methods
  • Palliative care
  • Research design
  • Review
  • Terminal care

ASJC Scopus subject areas

  • Medicine(all)

Cite this

Evaluating complex interventions in End of Life Care : The MORECare Statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews. / Higginson, Irene J. (Corresponding Author); Evans, Catherine J. (Corresponding Author); Grande, Gunn; Preston, Nancy; Morgan, Myfanwy; McCrone, Paul; Lewis, Penney; Fayers, Peter; Harding, Richard; Hotopf, Matthew; Murray, Scott A.; Benalia, Hamid; Gysels, Marjolein; Farquhar, Morag; Todd, Chris.

In: BMC medicine , Vol. 11, No. 1, 111, 24.04.2013.

Research output: Contribution to journalArticle

Higginson, IJ, Evans, CJ, Grande, G, Preston, N, Morgan, M, McCrone, P, Lewis, P, Fayers, P, Harding, R, Hotopf, M, Murray, SA, Benalia, H, Gysels, M, Farquhar, M & Todd, C 2013, 'Evaluating complex interventions in End of Life Care: The MORECare Statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews', BMC medicine , vol. 11, no. 1, 111. https://doi.org/10.1186/1741-7015-11-111
Higginson, Irene J. ; Evans, Catherine J. ; Grande, Gunn ; Preston, Nancy ; Morgan, Myfanwy ; McCrone, Paul ; Lewis, Penney ; Fayers, Peter ; Harding, Richard ; Hotopf, Matthew ; Murray, Scott A. ; Benalia, Hamid ; Gysels, Marjolein ; Farquhar, Morag ; Todd, Chris. / Evaluating complex interventions in End of Life Care : The MORECare Statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews. In: BMC medicine . 2013 ; Vol. 11, No. 1.
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abstract = "Background: 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.Methods: The Methods Of Researching End of life Care (MORECare) project built on the Medical Research Council guidance on the development and evaluation of complex circumstances. 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 on the best methods to research EoLC.Results: We integrated data from three systematic reviews and five TECs with 133 online responses. We recommend research designs extending beyond randomised trials and encompassing mixed methods. Patients and families value participation in research, and consumer or patient collaboration in developing studies can resolve some ethical concerns. It is ethically desirable to offer patients and families the opportunity to participate in research. Outcome measures should be short, responsive to change and ideally used for both clinical practice and research. Attrition should be anticipated in studies and may affirm inclusion of the relevant population, but careful reporting is necessitated using a new classification. Eventual implementation requires consideration at all stages of the project.Conclusions: The MORECare 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. The statement may be used alongside existing statements and provides a first step in setting common, much needed standards for evaluative research in EoLC. These are relevant to those undertaking research, trainee researchers, research funders, ethical committees and editors.",
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author = "Higginson, {Irene J.} and Evans, {Catherine J.} and Gunn Grande and Nancy Preston and Myfanwy Morgan and Paul McCrone and Penney Lewis and Peter Fayers and Richard Harding and Matthew Hotopf and Murray, {Scott A.} and Hamid Benalia and Marjolein Gysels and Morag Farquhar and Chris Todd",
note = "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 expert panel - Massimo Costantini, Steve Dewar, John Ellershaw, Claire Henry, William Hollingworth, Philip Hurst, Tessa Inge, Jane Maher, Irene McGill, Elizabeth Murray, Ann Netten, Sheila Payne, Roland Petchey, Wendy Prentice, Deborah Tanner and Celia A Taylor; Researchers - Hamid Benalia, Catherine J Evans, Marjolein Gysels, Nancy J Preston and Vicky Short. Morag Farquhar was supported by a Macmillan Cancer Support Post-Doctoral Fellowship. Irene J Higginson is an NIHR Senior Investigator. Additionally, we thank staff in the Cicely Saunders Institute researchers meeting, in particular Drs Fliss Murtagh, Gao Wei and Thomas Osborne, for their comments on an earlier draft of this paper.",
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N1 - 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 expert panel - Massimo Costantini, Steve Dewar, John Ellershaw, Claire Henry, William Hollingworth, Philip Hurst, Tessa Inge, Jane Maher, Irene McGill, Elizabeth Murray, Ann Netten, Sheila Payne, Roland Petchey, Wendy Prentice, Deborah Tanner and Celia A Taylor; Researchers - Hamid Benalia, Catherine J Evans, Marjolein Gysels, Nancy J Preston and Vicky Short. Morag Farquhar was supported by a Macmillan Cancer Support Post-Doctoral Fellowship. Irene J Higginson is an NIHR Senior Investigator. Additionally, we thank staff in the Cicely Saunders Institute researchers meeting, in particular Drs Fliss Murtagh, Gao Wei and Thomas Osborne, for their comments on an earlier draft of this paper.

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