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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

Research output: Contribution to journalArticle

Irene J Higginson ; Catherine J Evans ; Gunn Grande ; Nancy Preston ; Myfanwy Morgan ; Paul McCrone ; Penney Lewis ; Peter Fayers ; Richard Harding-Swale ; Matthew Hotopf ; Scott A Murray ; Abdelhamid Benalia ; Marjolein Gysels ; Morag Farquhar ; Chris Todd

Original languageEnglish
Article number111
Number of pages11
JournalBMC Medicine
Volume11
DOIs
StatePublished - 24 Apr 2013

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  • Evaluating complex interventions in End of Life Care GoldPub

    1741_7015_11_111.pdf, 592 KB, application/pdf

    24/04/2013

    Final published version

    CC BY

    © 2013 Higginson et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use,
    distribution, and reproduction in any medium, provided the original work is properly cited. (CC-BY)

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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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