Trial to answer dilemma of treating childhood epilepsy
Tuesday, 26 March 2019
New Oxford Brookes University research is to focus on the world’s first online intervention specifically for parents of children with epilepsy experiencing sleep issues.
This is part of one of the largest ever clinical trials in children with epilepsy which launches today (26 March 2019) and aims to find out which treatment approach works best for children and their families.
We have been working with families to better understand how the sleep problems of children with epilpesy, and their treatment, impact both parents and children so that the online intervention we develop will meet their needs at both practical and emotional levels.Dr Luci Wiggs, Reader in Psychology
The nationwide CASTLE project involves clinicians and researchers from institutions in the UK and overseas, including Oxford Brookes University, and is one of the only trials to compare antiepileptic drugs against active monitoring with no medication.
The CASTLE trial is launching on Purple Day, the family-focused epilepsy awareness day, and 28 NHS Trusts across the UK have already signed up to take part. The researchers are aiming to enrol 300 children with rolandic epilepsy.
Rolandic epilepsy is the most common form of childhood epilepsy, affecting around 10,000 young people in the U.K. Seizures happen most often at night and affect children between the ages of 5 and 12 before tapering off in adolescence.
Treating epilepsy with drugs to reduce seizures has traditionally been the goal of medical treatment. However, the drugs used to treat epilepsy often slow down a child’s thinking and learning. Because children with Rolandic epilepsy ‘grow out’ of their seizures, doctors and parents often don’t know whether to treat children or not, and many families choose no medication.
The CASTLE research programme focuses on more than seizures, to consider the wider aspects of living with rolandic epilepsy that are of importance to families, such as children's learning, sleep, behaviour, self-esteem and mood. Families have been central to the research programme in guiding the best ways to measure health and quality of life for children.
The CASTLE trial will compare two licensed drugs, comparing their effects to active monitoring with no medication. NICE guidelines recommend treatment with the standard epileptic drug carbamazepine which is very effective at preventing seizures but can have negative impacts on learning. A newer drug called levetiracetam might be just as effective but without impacts on learning but has not been evaluated in a rigorous clinical trial for rolandic epilepsy.
Professor Deb Pal from the Institute of Psychiatry, Psychology & Neuroscience at King’s, and co-leader of the trial, says: “For the first time in a major trial we are taking a very broad view of outcomes, looking beyond seizures to learning and a host of other issues that are important to young people and their parents. We hope the results will put to bed the notion of whether antiepileptic drugs cause more harm than good for some children with epilepsy, and help families decide the best course of action.”
The CASTLE trial is also testing whether improving sleep can reduce seizures. Dr Luci Wiggs, Reader in Psychology at Oxford Brookes University, is working to develop and evaluate an online sleep intervention, specifically for the parents of children with epilepsy who have sleep difficulties so that it can be used in the trial.
This will be the world’s first online sleep behaviour intervention especially for epilepsy and will teach parents how to encourage good sleep in their children. The trial will test how well the sleep intervention works both with and without medication for seizures.
Dr Wiggs who is working alongside Dr Georgia Cook, Post Doctoral Research Assistant, for this important aspect of the CASTLE project, commented: “Whilst we know there are well-evidenced treatments and strategies which can resolve many common sleep problems in children, we also know that there may be special considerations to using these with a child who has epilepsy. We have been working with families to better understand how the sleep problems of children with epilpesy, and their treatment, impact both parents and children so that the online intervention we develop will meet their needs at both practical and emotional levels.”
Professor Paul Gringras from Evelina London Children’s Hospital, and co-leader of the trial, said: “Sleep and seizures are intimate bedfellows. There is a vicious cycle whereby seizures and medications can affect sleep, but broken or insufficient sleep can also increase likelihood of seizures. This sleep disruption has huge impact on whole families, with mothers of children with epilepsy rarely getting more than four hours a night. We are asking a simple but vital question - can improving a child’s sleep reduce their seizures and improve their and their parents' well-being?”
The trial is funded by £2.3 million from the National Institute of Health Research and brings together a wealth of expertise from UK research institutions, including Oxford Brookes University, King's College London, the University of Liverpool, Edge Hill University, the University of Exeter and Bangor University.
Families interested in taking part are encouraged to speak to their paediatrician or epilepsy nurse. More details on taking part are available online and a blog with further detail on the online sleep intervention is also available to read.
Psychology at Oxford Brookes has an excellent reputation for providing research-led and student-centred teaching. Read more on the University’s dedicated webpages. Further information on Dr Luci Wiggs’ research can be found on her University profile page.