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.
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.
Authors: Jeremy Parr; Lindsay Pennington; Helen Taylor; Dawn Craig; Christopher Morris; Helen McConachie; Jill Cadwgan; Diane Sellers; Morag Andrew; Johanna Smith; Deborah Garland; Elaine McColl; Charlotte Buswell; Julian Thomas; Allan Colver Journal: Health Technol Assess Date: 2021-03 Impact factor: 4.014
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Authors: Christopher Morris; Astrid Janssens; Valerie Shilling; Amanda Allard; Andrew Fellowes; Richard Tomlinson; Jane Williams; Jo Thompson Coon; Morwenna Rogers; Bryony Beresford; Colin Green; Crispin Jenkinson; Alan Tennant; Stuart Logan Journal: Health Qual Life Outcomes Date: 2015-06-25 Impact factor: 3.186
Authors: Meta van den Heuvel; Wieger Voskuijl; Kate Chidzalo; Marko Kerac; Sijmen A Reijneveld; Robert Bandsma; Melissa Gladstone Journal: J Glob Health Date: 2017-12 Impact factor: 4.413
Authors: Astrid Janssens; Morwenna Rogers; Rebecca Gumm; Crispin Jenkinson; Alan Tennant; Stuart Logan; Christopher Morris Journal: Dev Med Child Neurol Date: 2015-12-11 Impact factor: 5.449