G45(P) Severe neurological impairment: towards an international consensus-based definition

Aims Following a thorough review of the literature, we have found significant inconsistency in the use of the term Severe Neurological Impairment (SNI) in the literature. We aimed to develop an international, consensus-based, multi-disciplinary definition of this term. Methods The Delphi process was chosen to achieve consensus on the definition of SNI. We collaborated with experts in 5 countries (Ireland, the UK, the USA, Canada and Australia) to disseminate an invitation to other colleagues in neurodisability in their own region. We specified that a multi-disciplinary panel was required. Those who wished to participate were asked to email us, as facilitators of the process, to confirm their desire to take part. Participants were asked to further disseminate the invitation to other colleagues, thus employing a snow-balling effect in the recruitment of expert panellists. The Delphi process proceeded over 3 rounds. Round 1 used free-text responses where panellists provided insight into their understanding of the term SNI. Responses were used to generate themes. In rounds 2 and 3 panellists were asked to rate their agreement with these themes in the definition of SNI. In the process of round 3 participants were provided with feedback on the previous round, including anonymous information on how the other panellists had voted as well as selected written feedback to provide an opportunity to consider other points of view. Items were brought forward to the final definition if they received more than 70% agreement, in line with accepted Delphi methodology. After round 3, a working definition of SNI was created. Further refinements were made based on comments from parent representatives and experts at an international conference. Results Thirty-four multi-disciplinary panellists participated in round 1 of the process falling to 31 in round 3, a 9% drop-out rate. Fifteen themes were generated from responses in round 1. Seven items were brought forward for inclusion in the final definition. Conclusion We have created an international, multi-disciplinary, consensus-based definition of SNI. This definition can be used to improve consistency in reporting of research, ultimately leading to improved outcomes for this unique and vulnerable cohort of children.