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Open Access Research article

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 Higginson1*, Catherine J Evans1*, Gunn Grande2, Nancy Preston23, Myfanwy Morgan4, Paul McCrone5, Penney Lewis6, Peter Fayers78, Richard Harding1, Matthew Hotopf9, Scott A Murray10, Hamid Benalia1, Marjolein Gysels111, Morag Farquhar12, Chris Todd2 and on behalf of MORECare

Author Affiliations

1 King’s College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, Bessmer Road, Denmark Hill, London, SE5 9PJ, UK

2 School of Nursing, Midwifery & Social Work, University of Manchester, Jean McFarlane Building, Oxford Road, Manchester, M13 9PL, UK

3 International Observatory on End of Life Care, Faculty of Health and Medicine, Lancaster University, Physics Avenue, Lancaster, LA1 4YT, UK

4 Department of Primary Care and Public Health Sciences, King’s College London, Capital House, Weston Street, London, SE1 3QD, UK

5 Department of Health Services and Population Research, King’s College London, Institute of Psychiatry, 16 De Crespingy Park, London, SE5 8AF, UK

6 King’s College London, Centre of Medical Law and Ethics, Dickson Poon School of Law, Strand, London, WC2R 2LS, UK

7 Institute of Applied Health Sciences, University of Aberdeen, Cornhill Road, Aberdeen, AB25 2ZD, UK

8 Department of Cancer Research and Molecular Medicine, Faculty of Medicine, NTNU, Prinsesse Kristinasgt. 1, NO-7006, Trondheim, Norway

9 Department of Psychological Medicine, King’s College London, Institute of Psychiatry, Weston Education Centre, Cutcombe Rd, London, SE5 9RJ, UK

10 Primary Palliative Care Research Group, Centre for Population Health Sciences, University of Edinburgh, Medical School, Teviot Place, Edinburgh, EH8 9AG, UK

11 University of Amsterdam, Centre for Social Science and Global Health, Oudezijds Achterburgwal 185, Amsterdam, 1012 DK, The Netherlands

12 Primary Care Unit, Department of Public Health & Primary Care, University of Cambridge, Institute of Public Health, Forvie Site, Robinson Way, Cambridge, CB2 OSR, UK

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BMC Medicine 2013, 11:111  doi:10.1186/1741-7015-11-111

Published: 24 April 2013

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.

Keywords:
Palliative care; Terminal care; Research design; Methods; Evaluation studies; Review; Consensus