Severe Neurological Impairment: A delphi consensus-based definition.

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.