Smith Eve M D, Egbivwie Naomi, Cowan Katherine, Ramanan Athimalaipet V, Pain Clare E
Department of Women's & Children's Health, Institute of Life Course and Medical Sciences, University of Liverpool, UK; Department of Paediatric Rheumatology, Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK.
Katherine Cowan Consulting Limited, Sussex, UK.
Lancet Rheumatol. 2022 Jul;4(7):e517-e524. doi: 10.1016/S2665-9913(22)00106-0.
The evidence base that underlies the management of children and young people with paediatric rheumatic diseases is deficient. In this field, there are many crucial unanswered questions. The UK Paediatric Rheumatology Clinical Studies Group, supported by UK National Institute for Health Research Clinical Research Network: children and Versus Arthritis, elicited ideas for research priorities from paediatric rheumatologists, trainees, allied health-care professionals, nurse specialists, patients, parents of patients, carers, and charities. These ideas were collected through online surveys and face-to-face meetings. A modified Delphi process was used, which included online research priority ranking surveys and a consensus workshop. A longlist of 55 disease-specific research priorities and 37 general research priorities were voted on in the first survey. A list of 11 top general research priorities was produced. The top ten disease-specific research priorities were discussed in depth at a Delphi workshop to determine their final ranking. This Health Policy paper will help to guide clinicians, academics, and funding bodies to prioritise research in paediatric rheumatic diseases, specifically in areas of unmet patient needs.
儿童和青少年风湿性疾病管理的证据基础存在不足。在这一领域,有许多关键问题尚未得到解答。英国儿科风湿病临床研究小组在英国国家卫生研究院临床研究网络:儿童与对抗关节炎组织的支持下,从儿科风湿病学家、实习生、专职医疗保健专业人员、护士专家、患者、患者父母、护理人员和慈善机构中征集了研究重点的想法。这些想法通过在线调查和面对面会议收集。采用了一种改进的德尔菲法,其中包括在线研究重点排名调查和一次共识研讨会。在第一次调查中,对一份包含55项疾病特异性研究重点和37项一般研究重点的初选清单进行了投票。生成了一份11项顶级一般研究重点的清单。在一次德尔菲研讨会上深入讨论了十大疾病特异性研究重点,以确定它们的最终排名。这篇卫生政策论文将有助于指导临床医生、学者和资助机构确定儿科风湿性疾病研究的优先次序,特别是在未满足患者需求的领域。