Department of Paediatrics, Tallaght University Hospital, Tallaght, Dublin, Ireland; Discipline of Paediatrics and Child Health, Trinity College, The University of Dublin, Ireland; Trinity Research in Childhood Centre, Trinity College, The University of Dublin, Ireland.
Trinity Research in Childhood Centre, Trinity College, The University of Dublin, Ireland; School of Nursing and Midwifery, Trinity College, The University of Dublin, Ireland.
Eur J Paediatr Neurol. 2020 Nov;29:81-86. doi: 10.1016/j.ejpn.2020.09.001. Epub 2020 Sep 11.
Severe Neurological Impairment (SNI) is a term for which there is no consistently used definition. This may hamper consistency in the reporting of research in the area and communication between professionals involved in the care of those with SNI.
We aimed to create an international, multidisciplinary, consensus-based definition of SNI.
The Delphi method was employed to reach consensus on the definition of SNI.
An international, multi-disciplinary expert panel was recruited. The process proceeded over three rounds with feedback provided to panellists between each of them. Consensus was defined as 70% agreement. A working definition was created and, following presentation at an international meeting and consultation with parent representatives, further refined, to create a finalised definition.
Thirty-four expert panellists commenced the process. Six items reached the threshold of consensus. The finalised definition is as follows: "Severe Neurological Impairment describes a group of disorders of the central nervous system which arise in childhood, resulting in motor impairment, cognitive impairment and medical complexity, where much assistance is required with activities of daily living. The impairment is permanent but can be progressive or static."
A consensus-based definition of SNI which includes multi-disciplinary, international and parental input has been created. This should prove useful for clinical, research and resource-planning purposes.
严重神经功能障碍(SNI)是一个没有统一定义的术语。这可能会影响该领域研究报告的一致性,并阻碍涉及 SNI 患者护理的专业人员之间的沟通。
我们旨在制定一个国际性、多学科、基于共识的 SNI 定义。
采用德尔菲法就 SNI 的定义达成共识。
招募了一个国际性、多学科的专家小组。该过程进行了三轮,每轮之间向小组成员提供反馈。共识定义为 70%的同意率。创建了一个工作定义,并在国际会议上展示并与家长代表协商后,进一步完善,形成最终定义。
34 名专家小组成员开始了这一过程。有 6 项达到了共识的门槛。最终的定义如下:“严重神经功能障碍描述了一组儿童时期出现的中枢神经系统疾病,导致运动障碍、认知障碍和医疗复杂性,日常生活活动需要大量帮助。损伤是永久性的,但可能是进行性的或静止的。”
已经制定了一个基于共识的 SNI 定义,其中包括多学科、国际性和家长的意见。这对于临床、研究和资源规划目的应该是有用的。