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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.
The Methods Of Researching End of Life Care (MORECare) is a collaboration between King’s College London, University of Manchester, University of Edinburgh and University of Aberdeen the UK Medical Research Council (MRC) and National Institutes of Health Research (NIHR).
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.
bTransparent Expert Consultations
We would like to thank the workshop participants for their time and contributions to developing the guidance statement Show/Hide names
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 Ing, 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.