Taylor Clare J, Huntley Alyson L, Burden John, Gadoud Amy, Gronlund Toto, Jones Nicholas Robert, Wicks Eleanor, McKelvie Sara, Byatt Kit, Lehman Richard, King Anna, Mumford Bev, Feder Gene, Mant Jonathan, Hobbs Richard, Johnson Rachel
Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, Oxfordshire, UK.
Bristol Medical School, University of Bristol Faculty of Health Sciences, Bristol, UK.
Open Heart. 2020 Jun;7(1). doi: 10.1136/openhrt-2020-001258.
To determine research priorities in advanced heart failure (HF) for patients, carers and healthcare professionals.
Priority setting partnership using the systematic James Lind Alliance method for ranking and setting research priorities. An initial open survey of patients, carers and healthcare professionals identified respondents' questions, which were categorised to produce a list of summary research questions; questions already answered in existing literature were removed. In a second survey of patients, carers and healthcare professionals, respondents ranked the summary research questions in order of priority. The top 25 unanswered research priorities were then considered at a face-to-face workshop using nominal group technique to agree on a 'top 10'.
192 respondents submitted 489 responses each containing one or more research uncertainty. Out-of-scope questions (35) were removed, and collating the responses produced 80 summary questions. Questions already answered in the literature (15) were removed. In the second survey, 65 questions were ranked by 128 respondents. The top 10 priorities were developed at a consensus meeting of stakeholders and included a focus on quality of life, psychological support, the impact on carers, role of the charity sector and managing prognostic uncertainty. Ranked priorities by physicians and patients were remarkably divergent.
Engaging stakeholders in setting research priorities led to a novel set of research questions that might not have otherwise been considered. These priorities can be used by researchers and funders to direct future research towards the areas which matter most to people living with advanced HF.
确定晚期心力衰竭（HF）患者、护理人员及医疗保健专业人员的研究重点。
采用系统的詹姆斯·林德联盟方法进行优先事项设定合作，以对研究重点进行排序和设定。对患者、护理人员及医疗保健专业人员进行初步公开调查，确定受访者的问题，并进行分类以生成汇总研究问题列表；去除现有文献中已回答的问题。在对患者、护理人员及医疗保健专业人员进行的第二次调查中，受访者按优先顺序对汇总研究问题进行排序。然后，使用名义群体技术在一次面对面研讨会上审议前25项未回答的研究重点，以商定“前10项”。
192名受访者提交了489份回复，每份回复包含一个或多个研究不确定性问题。去除范围外问题（35个），整理回复后产生80个汇总问题。去除文献中已回答的问题（15个）。在第二次调查中，128名受访者对65个问题进行了排序。在利益相关者共识会议上确定了前10项重点，包括关注生活质量、心理支持、对护理人员的影响、慈善部门的作用以及管理预后不确定性。医生和患者排出的优先顺序差异显著。
让利益相关者参与确定研究重点，产生了一组可能不会被其他方式考虑的全新研究问题。研究人员和资助者可利用这些重点，将未来研究导向对晚期HF患者最重要的领域。
