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Research and Projects

Changing Agendas on Sleep, Treatment and Learning in Epilepsy - A long term condition of children (CASTLE)

Who is involved?

Theme: Evidence for Policy and Practice
Status: Live

Background

Epilepsy is a common long-term condition of the brain that usually starts in childhood and causes seizures. Children’s learning, sleep, behaviour, self-esteem and mood are often affected by the condition. Many children with epilepsy also experience disturbed sleep, which can further reduce learning ability, trigger seizures and affect parents’ sleep and stress levels.

Traditionally, medical treatment has focused on drugs to reduce seizures. However, this does not necessarily help with the self-esteem and mood-related effects of epilepsy, and the drugs used to treat epilepsy can affect a child’s thinking and learning. 

The CASTLE project's research focus is on school-aged children with the most common type of childhood epilepsy, called rolandic epilepsy, also known as ‘childhood epilepsy with centrotemporal spikes’. Children with rolandic epilepsy ‘grow out’ of their seizures, in that they cease during their teenage years. There is a lack of evidence about whether is better to treat these children with drugs or not, especially if this might have a negative effect on their learning. 

CASTLE is a £2.3m programme grant, funded by the National Institute of Health Research and led by Professor Deb Pal at King’s College London, which aims to address this knowledge gap by working with children, parents and health professionals to devise and run a clinical trial. The project will also adapt and evaluate a sleep behavioural intervention for children with epilepsy. Find out more on the CASTLE project webpage.

Project aims

The Peninsula Cerebra Research Unit for Childhood Disability Research (PenCRU) and the PenCLAHRC Evidence Synthesis Team are leading a specific piece of research as part of the CASTLE programme called Core Health Outcomes In Childhood Epilepsy (CHOICE). CHOICE is a study to select a core outcome set for the CASTLE project.

There is increasing recognition that establishing a core set of outcomes to be evaluated and reported in trials of interventions for particular conditions will improve the usefulness of health research.

Families, charities and health professionals will help us to identify what outcomes are most important to measure; then we will decide how to measure those outcomes. This will inform the design of the subsequent CASTLE clinical trial.

Anticipated outputs

As well as supporting the CASTLE project, our research aims to help change the broader epilepsy research agenda from a seizure-centred medical model towards broader child and family priorities, and to focus scarce resources on the most important outcomes we identify.

Others Involved

Parent carer co-investigators: Janet Currier, Deborah Roberts

Partners

King's College London
Professor Deb K Pal - Principal Investigator

King’s College Hospital NHS Foundation Trust
Lizzie Smith

Bangor University
Professor Dyfrig Hughes

Edge Hill University
Dr Lucy Bray
Professor Bernie Carter

Evelina London Children’s Hospital
Professor Paul Gringras

Oxford Brookes University
Dr Luci Wiggs

Royal Children's Hospital, Melbourne
Dr Harriet Hiscock

Sherwood Forest Hospitals NHS Foundation Trust
Dr Colin Dunkley

University Hospital of Wales
Dr Frances Gibbon

University of Liverpool
Professor Paula Williamson
Helen Gillard
Dr Catrin Tudur Smith