Barbaret Cécile, Habert-Dantigny Raphaëlle, Rouze Héloïse, Huynh Doan, Huynh Roseline, Tête Caroline, Julier-Costes Martin, Amouroux-Gorsse Valérie, Lavault Isabelle, Bret Justine, Economos Guillaume, Ecarnot Fiona, Sanchez Stéphane
Palliative Care, CHUGA, Grenoble, France
Centre Hospitalier Universitaire Grenoble Alpes, Grenoble, France.
BMJ Open. 2025 Feb 2;15(1):e090800. doi: 10.1136/bmjopen-2024-090800.
As one means to avoid waste in research investment, involving patients as full partners in research has become increasingly frequent. There is clearly a low level of investment in palliative care research. Following the guidance from the James Lind Alliance and the UK public consultation ('Palliative and End of Life Care Research Priorities Project'), we developed a 3-step protocol aimed at prioritising 10 unanswered questions in palliative care (PC) research in France, from the viewpoint of patients, volunteers, healthcare professionals and family caregivers.
To identify unanswered questions in PC (stage 1), an unstructured questionnaire will be used. This questionnaire will be tested on patients and healthcare professionals and modified, if necessary, before being made available online for a period of 6 months. A multidisciplinary steering committee including board-certified PC physicians, methodologists, nurses, a sociologist, an anthropologist and an information specialist will analyse the data collected in order to delete duplicate questions, do a thematic and population classification of the responses, modify questions using the PICO (patient problem, intervention, comparison and outcome) format and perform a literature review on each question to identify any relevant systematic review.
We expect the results to have wide-ranging benefits, for example, by prompting investment in the 10 prioritised research questions. There are also potential benefits for patients and caregivers, by including them as partners in future research. Regarding the current bill being examined by the government planning to legalise euthanasia and assisted suicide in France, this study will provide new insights into how patients and caregivers are prioritising those themes. The major benefit of this study is to involve patients and family caregivers as partners in PC research. They will be consulted and their choices will be valuable resources and may prompt researchers to focus on different topics. In view of the limited funding available, PC research needs to prioritise major issues and raise its visibility.The second stage of the study is the first-round prioritisation using a fixed format questionnaire, which will last 4 months. The third stage will consist of reaching a consensus regarding the top 10 unanswered questions in PC research, using the nominal group technique. A secondary objective during this third step is to study the reasons for the prioritisation.
作为避免研究投资浪费的一种手段，让患者成为研究的全面合作伙伴变得越来越普遍。姑息治疗研究的投资水平显然较低。遵循詹姆斯·林德联盟和英国公众咨询（“姑息与临终关怀研究优先项目”）的指导意见，我们制定了一个三步方案，旨在从患者、志愿者、医疗专业人员和家庭护理人员的角度，对法国姑息治疗（PC）研究中10个未解决的问题进行优先排序。
为了确定PC中未解决的问题（第一阶段），将使用一份非结构化问卷。该问卷将在患者和医疗专业人员中进行测试，并在必要时进行修改，然后在网上发布6个月。一个多学科指导委员会，包括获得董事会认证的PC医生、方法学家、护士、社会学家、人类学家和信息专家，将分析收集到的数据，以删除重复的问题，对回答进行主题和人群分类，使用PICO（患者问题、干预措施、对照和结果）格式修改问题，并对每个问题进行文献综述，以识别任何相关的系统综述。
我们预计研究结果将带来广泛的益处，例如促使对10个优先研究问题进行投资。将患者和护理人员纳入未来研究的合作伙伴，对他们也有潜在益处。关于政府正在审议的计划在法国将安乐死和协助自杀合法化的现行法案，本研究将为患者和护理人员如何对这些主题进行优先排序提供新的见解。本研究的主要益处是让患者和家庭护理人员成为PC研究的合作伙伴。他们将被咨询，他们的选择将是宝贵的资源，并可能促使研究人员关注不同的主题。鉴于可用资金有限，PC研究需要对重大问题进行优先排序并提高其知名度。研究的第二阶段是使用固定格式问卷进行第一轮优先排序，为期4个月。第三阶段将包括使用名义群体技术就PC研究中10个未解决的首要问题达成共识。此第三步的一个次要目标是研究优先排序的原因。
