Changing Agendas on Sleep, Treatment and Learning in Childhood Epilepsy (CASTLE)

Epilepsy is a common long-term condition of the brain that usually starts in childhood. Traditionally, medical treatment has focused on drugs to reduce seizures. However, the drugs used to treat seizures can affect a child’s thinking and learning, and there is a lack of evidence about whether the benefits of drugs outweigh the drawbacks. Children’s sleep, behaviour, self-esteem and mood can be affected by epilepsy and affect a parent’s health through disrupted sleep and increased stress.

Our 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. We don’t know if it is better to treat these children with drugs or not, especially if this might have a negative effect on their learning. This is something that parents are also very concerned about.

Changing Agendas on Sleep, Treatment and Learning in Childhood Epilepsy (CASTLE) is led by Prof Deb Pal at King’s College London and aims to address this knowledge gap. A team of researchers will work with children, parents and health professionals to devise and run a large clinical trial. The project team will also adapt and evaluate a sleep behaviour intervention for children with epilepsy.

Dr Chris Morris at PenCRU and Morwenna Rogers from the PenCLAHRC Evidence Synthesis Team will lead a specific project to select of a core outcome set for research in rolandic epilepsy. This is called the Core Health Outcomes In Childhood Epilepsy (CHOICE) study. Families, charities and health professionals will help us identify what outcomes are most important to measure; then how best to measure those outcomes using the methodology of the COMET Initiative

For more details see the main study page.

The research is funded by NIHR through a programme grant.

If you have any questions on the project, please get in touch.

 

Outputs

Crudgington H, Collingwood A, Bray L, Lyle S, Martin R, Gringras  (2020). Mapping epilepsy-specific patient-reported outcome measures for children to a proposed core outcome set for childhood epilepsy. Epilepsy & Behavior, 112 https://doi.org/10.1016/j.yebeh.2020.107372

Crudgington, H, Rogers, M, Morris, H, Gringras, P, Pal, DK, Morris, C. Epilepsy‐specific patient‐reported outcome measures of children's health‐related quality of life: A systematic review of measurement properties. Epilepsia. 2020; 00: 1– 19. https://doi.org/10.1111/epi.16430

Crudgington H, Rogers M, Bray L, Carter B, Currier J, Dunkley C, Gibbon FM, Hughes D, Lyle S, Roberts D, et al (2019). Core Health Outcomes in Childhood Epilepsy (CHOICE): Development of a core outcome set using systematic review methods and a Delphi survey consensus. Epilepsia, 60(5), 857-871. https://doi.org/10.1111/epi.14735 see also Plain language summary

Core Health Outcomes In Childhood Epilepsy (CHOICE) Speical Edition Plain Language Summary (2018) Protocol for the selection of a core outcome set

Morris C, Dunkley CGibbon FMCurrie JRoberts DRogers MCrudgington H, Bray LCarter BHughes DTudur Smith CWilliamson PRGringras P and Pal DK (2017) Core Health Outcomes In Childhood Epilepsy (CHOICE): protocol for the selection of a core outcome set. Trials 18:572 https://doi.org/10.1186/s13063-017-2323-7