NCRC funded investigators affiliated with the Trinity Research in Childhood Centre have published an international, multi-disciplinary and consensus-based definition of Severe Neurological Impairment.
This research is part of a wider project entitled SERENITY: SEveRE Neurological Impairment and children with medical complexiTY, being carried out by Dr John Allen, Professor Eleanor Molloy, and Professor Denise McDonald (Department of Paediatrics in Trinity College Dublin and Children’s Health Ireland at Tallaght). They coordinated a process with several international experts, from 5 countries, to create a consensus on the essential components of the term Severe Neurological Impairment (SNI).
SNI is an umbrella term which is frequently used in the medical literature to describe children with significant disability and complex medical needs as a result of an issue in the central nervous system. This may include children with cerebral palsy or certain syndromes, such as Rett’s syndrome and Adrenoleukodystrophy. However, the researchers found a wide variation in how the term SNI was used throughout the medical literature. This may lead to problems with consistency in research, communication between clinical teams and planning of services for children with SNI.
Dr John Allen, lead author of the study explained the process used to reach this consensus definition:
“We were delighted to have experts in a wide variety of fields from Ireland, UK, USA, Canada and Australia who took part in the ‘Delphi’ consensus-building process. First, they each gave their own understanding of the term SNI. Then, over a number of rounds of surveys, they agreed on the most important aspects of the definition. This working definition of SNI was presented at a major international meeting in California in September 2019. We made some further refinements to the definition following open-floor discussion at the conference. Now, we are pleased to publish our consensus-based definition in an international peer-reviewed journal. We hope that the new definition will be widely adopted, leading to increased consistency in research and ultimately to improved outcomes for children with SNI and their families.”
The research has been published in “The European Journal of Paediatric Neurology” which is the official journal of the European Paediatric Neurology Society.
The full publication can be found by following this link:
Allen J, Brenner M, Hauer J, Molloy E, McDonald D. Severe Neurological Impairment: A delphi consensus-based definition. Eur J Paediatr Neurol. 2020 Sep 11:S1090-3798(20)30183-5. doi: 10.1016/j.ejpn.2020.09.001 (Pubmed)