Severe neurological impairment: a review of the definition. (25th June 2019)

• Record Type: Journal Article
• Authors: Allen, John; Molloy, Eleanor; McDonald, Denise
• Is Part Of: Developmental medicine & child neurology. Volume 62:Number 3(2020)
• Page Start: 277
• Page End: 282
• Publication Date: 2019-06-25
• Subjects: Child development -- Periodicals; Pediatric neurology -- Periodicals; 616.8
• DOI: 10.1111/dmcn.14294
• Languages: English
• ISSNs: 0012-1622

Abstract

Abstract : Severe neurological impairment (SNI) is a term commonly used in the medical literature, though there is no agreed definition. This limits opportunities for research into healthcare needs, treatment opportunities, resource planning, and outcome. We reviewed the literature to establish consistency of use of the term and to place it in the context of other commonly employed terms used to describe children with severe, complex medical needs. Forty‐two articles were included for full‐text analysis, with 23 including a definition of SNI. Motor impairment, intellectual disability, communication difficulties, and increased care needs were included in the definition in 80%, 70%, 30%, and 13% of papers respectively. Dependence on others for decision‐making, chronicity, and distinction between disorders of the central nervous system and peripheral nervous system were less frequently included. There is wide variation in the use of the term SNI. A consensus‐based definition of this term would be useful to facilitate future research. What this paper adds: There is inconsistency in use of the term severe neurological impairment (SNI), limiting research efforts. In defining SNI, considerations are mobility, intellectual disability, communication difficulties, and increased care needs. Distinction between acute and chronic, central and peripheral nervous system disorders, and dependence on others for decision‐making were less significant. What this paper adds: There is inconsistency in use of the term severe neurological impairment (SNI), limiting research efforts. In defining SNI, considerations are mobility, intellectual disability, communication difficulties, and increased care needs. Distinction between acute and chronic, central and peripheral nervous system disorders, and dependence on others for decision‐making were less significant. This article's abstract has been translated into Spanish and Portuguese. Follow the links from the abstract to view the translations. Video Podcast: https://youtu.be/o6ZfNnjarOM Resumen: Deficiencia neurológico severo: una revisión de la definición: El deficiencia neurológico severo es un término comúnmente utilizado en la literatura médica, aunque no existe una definición acordada. Esto limita las oportunidades de investigación sobre necesidades de atención médica, oportunidades de tratamiento, planificación de recursos y resultados. Revisamos la literatura para establecer la coherencia en el uso del término y colocarlo en el contexto de otros términos empleados comúnmente que se utilizan para describir a los niños con necesidades médicas graves y complejas. Se incluyeron 42 artículos para el análisis de texto completo, de los cuales 23 incluían una definición de deficiencia neurológico severo. La discapacidad motora, la discapacidad intelectual, las dificultades de comunicación y el aumento de las necesidades de atención se incluyeron en la definición en 80%, 70%, 30% y 13% de los artículos, respectivamente. La dependencia de otros para la toma de decisiones, la cronicidad y la distinción entre los trastornos del sistema nervioso central y el sistema nervioso periférico se incluyeron con menos frecuencia. Existe una amplia variación en el uso del término deficiencia neurológico severo. Una definición basada en el consenso de este término sería útil para facilitar futuras investigaciones. Resumo: Deficiência neurológica severa: uma revisão da definição: A deficiência neurológica severa (DNS) é uma termo comumente usado na literatura médica, embora não tenha definição consensual. Isso limita as oportunidades de pesquisas sobre necessidades de saúde, oportunidades de tratamento, planejamento de recursos, e resultados. Nós revisamos a literature para estabelecer a consistência do uso do termo, e para colocá‐lo no contexto de outros termos comumente empregados para descrever crianças com necessidades médicas severas e complexas. Quarenta e dois artigos foram incluídos para análise dos textos completes, com 23 includindo uma definição de DNS. Deficiência motora, deficiência intelectual, dificuldades de comunicação, e necessidades de cuidado aumentadas foram incluídas na definição 80%, 70%, 30%, e 13% dos artigos, respectivamente. Dependência de outros para tomada de decisões, cronicidade, e distinção entre desordens do sistema nervoso central e periférico foram menos frequentemente incluídas. Há grande variação no uso do termo DNS. Uma definição do termo baseada em consenso seria útil para facilitar futuras pesquisas.