A major trial involving nursing academics and nearly 30 health service trusts is to investigate the best way of treating and managing childhood epilepsy.
Two nursing professors from Edge Hill University are involved in one of the largest ever trials to find the best treatment approaches for Rolandic, or benign childhood, epilepsy.
“They will help us understand more about how children and their parents think the treatments and interventions work”
The CASTLE (Changing Agendas on Sleep, Treatment and Learning in Epilepsy) study is one of the only trials to compare antiepileptic drugs against active monitoring with no medication.
The trial is launching today to coincide with Purple Day, the international family-focused epilepsy awareness event on 26 March.
A total of 28 NHS trusts across the UK have already signed up to take part in the trial, and the researchers are aiming to enrol 300 children with rolandic epilepsy.
Edge Hill professors Bernie Carter and Lucy Bray are playing a pivotal role in the project, leading the work that engages children, parents and families in informing and shaping the study.
Rolandic epilepsy is the most common form of childhood epilepsy, affecting around 10,000 young people in the UK.
Seizures usually happen at night and affect children between the ages of five and 12 before tapering off in adolescence.
“Can improving a child’s sleep reduce their seizures and improve their and their parents’ wellbeing”
Treating epilepsy with drugs to reduce seizures has traditionally been the goal of medical treatment.
However, the drugs used often slow down thinking and learning and because children with rolandic epilepsy “grow out” of their seizures, clinicians often do not know whether to treat children or not.
The CASTLE research programme, which is led by King’s College London and the Evelina London Children’s Hospital, focuses on more than seizures, according to those behind the initiative.
It will also 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.
Bernie Carter, professor of children’s nursing, said: “Within this national trial, Professor Lucy Bray and I are going to be interviewing children and their parents about their experiences of rolandic epilepsy, sleep problems and issues relating to taking medication.
“These interviews are really important as they will help us understand more about how children and their parents think the treatments and interventions work and find out what, if any, problems they have had to deal with,” she said.
Professor Bernie Carter
“Without understanding how treatments and interventions work in the real world, we can’t know if they will be properly effective,” said Professor Carter.
The trial will compare two licensed drugs, comparing their effects to active monitoring with no medication.
National Institute for Health and Care Excellence 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.
A second key aim of the CASTLE trial is testing whether improving sleep can reduce seizures.
The researchers have developed the world’s first online sleep behaviour intervention especially for epilepsy, which teaches parents how to encourage good sleep in their children.
Professor Lucy Bray
The trial will test how well the sleep intervention works both with and without medication for seizures.
Professor Paul Gringras, co-leader of the trial from Evelina London Children’s Hospital, 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,” he said.
“This sleep disruption has huge impact on whole families, with mothers of children with epilepsy rarely getting more than four hours a night,” said Professor Gringras.
He added: “We are asking a simple but vital question – can improving a child’s sleep reduce their seizures and improve their and their parents’ wellbeing?”
The trial is funded by £2.3m from the National Institute of Health Research and involves the University of Liverpool, Edge Hill University, the University of Exeter, Oxford Brookes University and Bangor University.