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.
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.
- Evaluation studies
- Palliative care
- Research design
- Terminal care