'Severe Neurological Impairment' - Does The Term Define An Agreed Cohort For Study?

Background Severe Neurological Impairment (SNI) is a term commonly used in the medical literature. There is no agreed definition of SNI. 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. Methods A review of the literature was performed in October 2018. We searched the electronic database of PubMed and the Cochrane library. The search term ‘Severe Neurological Impairment’ was used. Animal studies were excluded but no other constraints were placed on the literature search. Forty-two articles were included for full-text analysis. Definitions were analysed for common themes. Data were entered into an electronic spreadsheet and descriptive statistics were used determine frequency of the themes included in the various definitions. Results Twenty-three of the papers reviewed included a definition of SNI, where the authors stated their interpretation of the use of the term SNI. In the other papers reviewed, the profile of the patients included by the authors provides insight into their understanding of the term. 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. Discussion This review demonstrates inconsistency in the use of the term Severe Neurological Impairment in the literature. Several other definitions exist to describe children with severe and complex medical conditions including Children with Special Healthcare Needs and Children with Medical Complexity. These definitions are often broad and include children with a wide variety of difficulties. Given their unique health and social care needs in the context of neurological impairment, an agreed definition distinguishing SNI from others would be helpful as a starting point to assess need and plan services. Conclusions We have performed a comprehensive review of the literature and have shown that there is a wide variation in the use of the term Severe Neurological Impairment. A consensus-based definition of this term would be useful to facilitate future research.