Article

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

Langue : ANGLAIS