Institute of Cardiovascular Sciences, University of Birmingham, Birmingham, UK
Paediatric Cardiac Surgery, Birmingham Children's Hospital, Birmingham, UK.
Open Heart. 2022 Nov;9(2). doi: 10.1136/openhrt-2022-002147.
To bring together patients, parents, charities and clinicians in a Priority Setting Partnership to establish national clinical priorities for research in children and adults with congenital heart disease.
The established James Lind Alliance methodology was used to identify and prioritise research on the management of congenital heart disease, focusing on diagnosis, treatment and outcomes. An initial open survey was used to gather potential uncertainties which were filtered, categorised, converted into summary questions and checked against current evidence. In a second survey, respondents identified the unanswered questions most important to them. At two final workshops, patients, parents, charities and healthcare professionals agreed the top 10 lists of priorities for child/antenatal and adult congenital heart disease research.
524 respondents submitted 1373 individual questions, from which 313 out of scope or duplicate questions were removed. The remaining 1060 questions were distilled into summary questions and checked against existing literature, with only three questions deemed entirely answered and removed. 250 respondents completed the child/antenatal survey (56 uncertainties) and 252 completed the adult survey (47 uncertainties). The questions ranked the highest by clinicians and non-clinicians were taken forward to consensus workshops, where two sets of top 10 research priorities were agreed.
Through an established and equitable process, we determined national clinical priorities for congenital heart disease research. These will be taken forward by specific working groups, a national patient and public involvement group, and through the establishment of a UK and Ireland network for collaborative, multicentre clinical trials in congenital heart disease.
将患者、家长、慈善机构和临床医生聚集在一个优先事项设定伙伴关系中，为儿童和成人先天性心脏病的研究确定国家临床优先事项。
采用既定的詹姆斯林德联盟方法，确定并优先考虑先天性心脏病管理方面的研究，重点是诊断、治疗和结局。初始的开放式调查用于收集潜在的不确定性，这些不确定性经过筛选、分类、转化为总结问题，并与现有证据进行核对。在第二次调查中，受访者确定了对他们最重要的未回答问题。在最后两次研讨会上，患者、家长、慈善机构和医疗保健专业人员共同确定了儿童/产前和成人先天性心脏病研究的前 10 项优先事项清单。
524 名受访者提交了 1373 个单独的问题，其中 313 个问题超出范围或重复。剩余的 1060 个问题被提炼成总结问题，并与现有文献进行核对，只有三个问题被认为完全回答并被删除。250 名受访者完成了儿童/产前调查（56 个不确定性），252 名受访者完成了成人调查（47 个不确定性）。临床医生和非临床医生排名最高的问题被带到共识研讨会，会上确定了两套前 10 名的研究优先事项。
通过既定和公平的程序，我们确定了先天性心脏病研究的国家临床优先事项。这些将由特定的工作组、一个国家患者和公众参与小组以及通过建立一个英国和爱尔兰协作、多中心先天性心脏病临床试验网络来推进。
