Towards a definition of neurodisability: a Delphi survey

Abstract

Aim: 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.

Method: 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.

Results: 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'.

Interpretation: An agreed definition of neurodisability will be useful for conducting research or clinical evaluations with people affected by neurological problems.

© 2013 Crown copyright. Developmental Medicine and Child Neurology © 2013 Mac Keith Press. This article is published with the permission of the Controller of HMSO and the Queen's Printer for Scotland.