Acute Encephalitis in Children: Which outcomes are important?

Encephalitis, inflammation of the brain tissue, is an uncommon but serious disease affecting children & adults worldwide. Typically 10-30% of patients die, and the majority are left with physical or neuropsychiatric disability. There is a need for more clinical trials to evaluate effectiveness of treatment options. However, there is minimal standardisation with regard to outcomes measured and few trials appear to evaluate patient centred outcomes.

There is currently no Core Outcome set for acute encephalitis. This mixed methods project will provide the initial steps towards COS development for paediatric encephalitis.


This research is being conducted at the Institute of Infection and Global Health, University of Liverpool

Researcher: Dr Jennifer Lemon1
Supervisors: Dr Rachel Kneen1 , Dr Jessie Cooper2, Professor Tom Solomon1

1) Brain Infections Group, Institute of Infection and Global Health, University of Liverpool, United Kingdom.
2) Department of Public Health & Policy, Institute of Psychology, Health and Society, University of Liverpool, United Kingdom.

The qualitative research is a sub-study of the UK Childhood Meningitis and Encephalitis Cohort Study (UK-ChiMES). Topic guides and information leaflets have been reviewed and developed with parents from the Encephalitis Society.

Further Study Information

Current Stage: Ongoing
Date: August 2013 - December 2014
Funding source(s): Institute of Infection and Global Health

Health Area

Disease Category: Infectious disease, Neurology

Disease Name: Encephalitis (acute)

Target Population

Age Range: 0 - 15

Sex: Either

Nature of Intervention: Any

Stakeholders Involved

- Consumers (caregivers)
- Patient/ support group representatives

Study Type

- Patient perspectives
- Systematic review of outcomes measured in trials


- Interview
- Systematic review

Systematic review: Clinical effectiveness trials involving patients of all ages with acute encephalitis will be identified by searching CENTRAL, MEDLINE, EMBASE and clinical trials registries and screened against inclusion/ exclusion criteria. We will assess which outcomes have been reported, how they have been measured and which outcome domains they cover. We will examine how outcome measures differ, according to participants’ age.

Qualitative study: Semi-structured interviews will be conducted with 10-15 parents of children who have had encephalitis, to explore which outcomes are most important to their child and family. Transcripts will be thematically analysed, to look for emerging themes.