Towards a definition of neurodisability: a Delphi survey. (5th August 2013)

• Record Type: Journal Article
• Authors: Morris, Christopher; Janssens, Astrid; Tomlinson, Richard; Williams, Jane; Logan, Stuart
• Is Part Of: Developmental medicine & child neurology. Volume 55:Number 12(2013:Dec.)
• Page Start: 1103
• Page End: 1108
• Publication Date: 2013-08-05
• Subjects: Child development -- Periodicals; Pediatric neurology -- Periodicals; 616.8
• DOI: 10.1111/dmcn.12218
• Languages: English
• ISSNs: 0012-1622

Abstract

<abstract abstract-type="main" id="dmcn12218-abs-0001"> <title> <x xml:space="preserve">Abstract</x> </title> <sec id="dmcn12218-sec-0001" sec-type="section"> <title>Aim</title> <p>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.</p> </sec> <sec id="dmcn12218-sec-0002" sec-type="section"> <title>Method</title> <p>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.</p> </sec> <sec id="dmcn12218-sec-0003" sec-type="section"> <title>Results</title> <p>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'.</p> </sec> <sec id="dmcn12218-sec-0004" sec-type="section"> <title>Interpretation</title> <p>An agreed definition of neurodisability will be useful for conducting research or clinical evaluations with people affected by neurological problems.</p> </sec> </abstract>