Conditions may vary over time, occur alone or in combination, and include a broad range of severity and complexity. A specific diagnosis may not be identified. 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.
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The final version of the definition was widely endorsed among professionals, parents, and a small number of international colleagues. Agreement with the proposed definition was extremely high in every round (89.0%, 90.1%, and 93.6% respectively). Finally, a perspective was sought from international experts.
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Participants rated their agreement with a proposed definition in each round, and feedback was used to refine the definition. Professionals participated in three rounds of a Delphi survey.
Delphi definition professional#
The chart below shows the number of panellists with experience of each condition from each round of the research.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.Ī 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. Some panellists dropped out over the course of the surveys, and the third survey had seven respondents. Over 99% of the people currently receiving PIP because they are terminally ill have one of these conditions as their main disabling condition. The panel consisted initially of 15 experts with experience of a variety of conditions. Over the course of the surveys the panellists responses got more alike.
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Delphi definition series#
This took the form of a series of three iterative questionnaires answered by an anonymous expert panel consisting of doctors and nurses with experience of completing the DS1500 form.Īfter each survey, or "round", the panel's responses were anonymised and summarised and with this information the panel were invited to re-evaluate their response in light of the replies given by the other experts. The Delphi technique is a way of obtaining a collective view from individuals where there is little or no definitive evidence and where opinion is important.
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The Delphi method was identified as a suitable approach to collect and analyse the opinion of medical professionals on the impact of the new guidance on the number of people eligible for Disability Assistance because they are terminally ill. This is due to a number of reasons, one of the most significant being uncertainty around how medical professionals will apply their judgement. Earlier analytical work established that there is limited existing data we could use to quantify the impact of the new guidance on the number of people who would qualify for Disability Assistance under terminal illness rules.