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.

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.
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DOI:
10.1186/1741-7015-11-111
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发表时间:
2013-04-24
期刊:
影响因子:
9.3
通讯作者:
MORECare
MORECare
中科院分区:
医学1区
文献类型:
--
作者:
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;MORECare

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尽管临终关怀(EOLC)是医学的核心业务,但却被忽视。它受到研究的阻碍,这些研究很难在没有共同标准的情况下进行。我们的目标是就设计和开展EOLC研究的最佳方法制定循证指导,以加深该领域的知识。研究临终关怀(MORECare)项目的方法建立在医学研究理事会关于复杂情况的发展和评估的指导之上。我们进行了系统的文献回顾、透明的专家咨询(TEC),涉及名义分组和在线投票的共识方法,以及利益相关者研讨会,以确定EOLC研究中的挑战和最佳做法,包括:参与招聘、伦理、自然减员、混合方法的整合、复杂结果和经济评估。我们综合了所有的发现,制定了一份关于研究EOLC的最佳方法的指导声明。我们整合了来自三个系统评价和五个TEC的数据,以及133个在线回复。我们建议将研究设计扩展到随机试验之外,并包含混合方法。患者和家庭重视参与研究,消费者或患者合作开发研究可以解决一些伦理问题。为患者和家属提供参与研究的机会在伦理上是可取的。结果测量应该简短,对变化作出反应,并理想地用于临床实践和研究。减员应在研究中预测,并可能确认纳入相关人群,但使用新的分类方法需要仔细报告。最终的实施需要在项目的所有阶段加以考虑。MORECare声明为EOLC的研究评估服务和治疗提供了36个最佳实践解决方案,以提高研究质量并为未来的研究设定标准。该声明可与现有声明一起使用,并为EOLC的评估性研究制定共同的、亟需的标准提供了第一步。这些与从事研究的人、见习研究人员、研究资助者、伦理委员会和编辑有关。
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) 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. 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. 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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