Peninsula Cerebra Research Unit & NIHR PenCLAHRC, University of Exeter Medical School, Exeter, UK.
Dev Med Child Neurol. 2013 Dec;55(12):1103-8. doi: 10.1111/dmcn.12218. Epub 2013 Aug 5.
The aim of this study was to develop, systematically, a consensus-based definition for 'neurodisability' that is meaningful to health professionals and parents of children with neurological conditions.
A multidisciplinary group of health professionals was recruited through child development teams and professional societies in the UK; several parents of children with neurological conditions worked with the research team. Professionals participated in three rounds of a Delphi survey. Participants rated their agreement with a proposed definition in each round, and feedback was used to refine the definition. Finally, a perspective was sought from international experts.
Responses to the three rounds were as follows: round 1,245 out of 290 (84.4%); round 2,242 out of 300 (80.6%); and round 3,237 out of 297 (79.7%). Agreement with the proposed definition was extremely high in every round (89.0%, 90.1%, and 93.6% respectively). The final version of the definition was widely endorsed among professionals, parents, and a small number of international colleagues. The final definition is as follows: 'Neurodisability describes a group of congenital or acquired long-term conditions that are attributed to impairment of the brain and/or neuromuscular system and create functional limitations. A specific diagnosis may not be identified. Conditions may vary over time, occur alone or in combination, and include a broad range of severity and complexity. The impact may include difficulties with movement, cognition, hearing and vision, communication, emotion, and behaviour'.
An agreed definition of neurodisability will be useful for conducting research or clinical evaluations with people affected by neurological problems.
本研究旨在为“神经残疾”制定一个基于共识的定义，这个定义对神经疾病患儿的医护人员和家长有意义。
通过英国儿童发展团队和专业协会招募了一组多学科的医护人员；几名神经疾病患儿的家长与研究团队合作。专业人员参与了三轮 Delphi 调查。参与者在每一轮中对拟议定义的同意程度进行了评分，反馈用于完善定义。最后，还征求了国际专家的意见。
三轮的回复情况如下：第 1 轮，290 人中的 245 人（84.4%）；第 2 轮，300 人中的 242 人（80.6%）；第 3 轮，297 人中的 237 人（79.7%）。每一轮对拟议定义的同意程度都极高（分别为 89.0%、90.1%和 93.6%）。该定义的最终版本在专业人员、家长和少数国际同行中得到了广泛认可。最终的定义如下：“神经残疾描述了一组先天性或后天性的长期疾病，这些疾病归因于脑和/或神经肌肉系统的损伤，并造成功能限制。可能无法确定具体的诊断。这些疾病可能随时间变化，单独或组合出现，包括广泛的严重程度和复杂性。其影响可能包括运动、认知、听力和视力、沟通、情绪和行为方面的困难。”
对神经残疾的定义达成一致将有助于对受神经问题影响的人群进行研究或临床评估。
