Severe Neurological Impairment: A delphi consensus-based definition. (November 2020)

• Record Type: Journal Article
• Authors: Allen, John; Brenner, Maria; Hauer, Julie; Molloy, Eleanor; McDonald, Denise
• Is Part Of: European journal of paediatric neurology. Volume 29(2020)
• Page Start: 81
• Page End: 86
• Publication Date: 2020-11
• Subjects: Severe neurological impairment -- Delphi -- Consensus -- Definition; Pediatric neurology -- Periodicals; Nervous System Diseases -- Periodicals; Child -- Periodicals; Infant -- Periodicals; Neurologie pédiatrique -- Périodiques; Pediatric neurology; Electronic journals; Periodicals; Electronic journals; 618.928
• DOI: 10.1016/j.ejpn.2020.09.001
• Languages: English
• ISSNs: 1090-3798

Abstract

Abstract: Background: Severe Neurological Impairment (SNI) is a term for which there is no consistently used definition. This may hamper consistency in the reporting of research in the area and communication between professionals involved in the care of those with SNI. Objective: We aimed to create an international, multidisciplinary, consensus-based definition of SNI. Design: The Delphi method was employed to reach consensus on the definition of SNI. Method: An international, multi-disciplinary expert panel was recruited. The process proceeded over three rounds with feedback provided to panellists between each of them. Consensus was defined as 70% agreement. A working definition was created and, following presentation at an international meeting and consultation with parent representatives, further refined, to create a finalised definition. Results: Thirty-four expert panellists commenced the process. Six items reached the threshold of consensus. The finalised definition is as follows: "Severe Neurological Impairment describes a group of disorders of the central nervous system which arise in childhood, resulting in motor impairment, cognitive impairment and medical complexity, where much assistance is required with activities of daily living. The impairment is permanent but can be progressive or static." Conclusion: A consensus-based definition of SNI which includes multi-disciplinary, international and parental input has been created. This should prove useful for clinical, research and resource-planning purposes. Highlights: Severe neurological impairment (SNI) is a term which has not been consistently defined. Lack of an agreed definition can result in variance in reporting of research, including incidence and outcome measures. The Delphi method has been successfully used as a method of reaching consensus, including the creation of definitions. A consensus-based, international, multi-disciplinary definition of the term SNI has been formulated. This definition can be used to perform consistent, reproducible research and for adequate service-planning.