Standardised guidelines and reference networks for treating neuroinflammatory conditions in children are lacking

To investigate whether local or national guidelines are used in treating neuroinflammatory conditions in children and if there is a perceived need for more guidelines and forums of cooperation.

A web-based questionnaire sent to all university hospitals in the Nordic countries (n = 21) between March and July 2015.

All 21 centres replied to the survey. Markers of neuronal or glial damage and markers of inflammation were used at varying rates. Neuronal antibodies were used at all sites except two. Only three hospitals collaborated with their laboratories in developing new assays for biomarkers. Although most centres used some form of guideline for neuroinflammatory conditions, no single disease had a guideline prevalence over 60%. For some diagnoses, access to guidelines was as low as 10%. Standardised follow-up programs were lacking in 50-95%. A clear majority of the centres perceived a need for more guidelines. Also, forums of cooperation were few. However, there was a great interest in developing paediatric neuroinflammatory guidelines and to create platforms for further consensus work and discussion.

There is a need for developing treatment guidelines within the field of paediatric neuroinflammation to aid in clinical decision-making, and to establish forums of cooperation.