Drury Nigel E, Stoll Victoria M, Bond Chris J, Patel Akshay J, Hutchinson Suzie, Clift Paul F
1Department of Paediatric Cardiac Surgery,Birmingham Children's Hospital,Birmingham,UK.
2Institute of Cardiovascular Sciences,University of Birmingham,Birmingham,UK.
Cardiol Young. 2019 Mar;29(3):303-309. doi: 10.1017/S104795111800224X. Epub 2018 Dec 21.
To bring together stakeholders in the United Kingdom to establish national priorities for research in single-ventricle heart conditions.
This study comprised two surveys and a workshop. The initial public online survey asked respondents up to three questions they would like answered for research. Responses were classified as unanswered, already answered, or unable to be answered by scientific research. In the follow-up survey, unanswered questions were divided into categories and respondents were asked to rank categories and questions by priority. A stakeholder workshop attended by patients, parents, healthcare professionals, researchers, and charities was held to determine the final list of research priorities.
A total of 128 respondents posed 344 research questions, of which 271 were classified as unanswered, and after removing duplicates, 204 questions remained, which were divided into 20 categories. In the second survey, 56 (49.1%) respondents successfully ranked categories and questions. A total of 39 participants attended the workshop, drawing up a list of 30 research priorities across nine priority categories. The nine priority categories are: Associated co-morbidities; Brain & neurodevelopment; Exercise; Fontan failure; Heart function; Living with a single ventricle heart condition; Management of the well-functioning Fontan circulation; Surgery & perioperative care; and Transplantation, mechanical support & novel therapies.
Through a multi-stage process, we engaged a wide range of interested parties to establish a list of research priorities in single-ventricle heart conditions. This provides a platform for clinicians, researchers, and funders in the United Kingdom and elsewhere to address the most important questions and improve outcomes in these rare but high-impact CHDs.
召集英国的利益相关者，确定单心室心脏病的国家研究重点。
本研究包括两项调查和一次研讨会。最初的公众在线调查询问受访者最多三个他们希望通过研究得到解答的问题。回答被分类为未解答、已解答或无法通过科学研究解答。在后续调查中，未解答的问题被分类，受访者被要求按优先级对类别和问题进行排序。举办了一次由患者、家长、医疗保健专业人员、研究人员和慈善机构参加的利益相关者研讨会，以确定研究重点的最终清单。
共有128名受访者提出了344个研究问题，其中271个被分类为未解答，去除重复问题后，剩下204个问题，分为20个类别。在第二次调查中，56名（49.1%）受访者成功对类别和问题进行了排序。共有39名参与者参加了研讨会，制定了一份涵盖九个优先类别的30项研究重点清单。这九个优先类别是：相关合并症；大脑与神经发育；运动；Fontan循环衰竭；心脏功能；患有单心室心脏病的生活；功能良好的Fontan循环的管理；手术及围手术期护理；以及移植、机械支持和新疗法。
通过多阶段过程，我们让广泛的相关方参与，确定了单心室心脏病的研究重点清单。这为英国及其他地区的临床医生、研究人员和资助者提供了一个平台，以解决最重要的问题，并改善这些罕见但影响重大的先天性心脏病的治疗结果。
