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.
The Peninsula 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 seeking consensus agreement on which outcomes are most important to measure for children with the most common type of epilepsy. The team require families of children with rolandic epilepsy, clinicians and other people working with children with rolandic epilepsy (sometime called benign epilepsy with centro-temporal spikes or BECTS) to participate in an online survey to select the core outcomes. For more information, or to take part, visit the website.
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.
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.
Morris C, Dunkley C, Gibbon FM, Currie J, Roberts D, Rogers M, Crudgington H, Bray L, Carter B, Hughes D, Tudur Smith C, Williamson PR, Gringras P, Pal DK (2017). Core Health Outcomes In Childhood Epilepsy (CHOICE): protocol for the selection of a core outcome set. Trials 18(572)
- Janet Currier