Case study: Patients are central to the design of new epilepsy research study
A new epilepsy research study has launched that puts the advice of epilepsy patients and their families at the heart of the study’s design.
The CASTLE study into childhood epilepsy is supported by the National Institute for Health Research (NIHR) and will be run from King’s College London Institute of Psychiatry, Psychology and Neuroscience in south London. The study is investigating the effect of sleep on sufferers of childhood epilepsy.
Childhood epilepsy affects over 60,000 children in the UK and over 10,000 of them suffer from a type called rolandic epilepsy where children ‘grow out’ of their seizures in teenage years. Drugs for preventing epileptic seizures often slow down a patient’s thinking and learning so the study will address if new treatments that focus on getting enough sleep will avoid the need for these drugs and improve the quality of life for children with epilepsy.
As part of the CASTLE study, patients and their families were invited to be involved in designing the study and advising on how it will be run. This is called Patient and Public Involvement (PPI) in research and it is becoming increasingly common for research studies across the UK. In order to pass ethical approval from the Health Research Authority, health researchers need to show they are meeting patient need and it’s through talking to patients and carers and involving them in the design of research that they can discover and respond to patient need.
The launch of the CASTLE study coincides with an internationally celebrated epilepsy awareness day, called Purple Day, which started in 2008 and is supported by UK epilepsy charities including the Epilepsy Society, Epilepsy Action and Epilepsy Research UK.
Janet Currier (pictured below) from Lewisham is mother to 17-year-old Dillon who has epilepsy and began having chronic seizures at the age of 12. Janet has also suffered from mild epilepsy since childhood and decided to be part of the Patient and Public Involvement group working on the CASTLE study. She said:
“I had no reservations about taking part. It’s been enriching and really good to understand more about epilepsy research and throughout the process I feel we’ve really been listened to. I think the CASTLE study is brilliant to be going beyond just looking at seizures and to take account of the impact that medication has on a child’s learning. It’s taking a holistic approach that is radical, new and very important.
“The focus of the study is making sure children and their parents get enough sleep and that is absolutely fundamental. Having a child with epilepsy affects the whole family’s sleep and sleep deprivation has a big impact on seizures.”
Deborah Roberts’ daughter, Sara, had epilepsy from the age of 8 to the age of 17 and Deborah herself has had epilepsy since the age of 12. She has met and collaborated with researchers as a PPI representative on the CASTLE study for four years. She said:
“I’ve had epilepsy since I was 12. At school you get bullied for being a nutcase. It’s not a talked about issue. Teenage years are terrible. It can happen anytime and so it restricts what you can do: You can’t drive, you can’t go swimming with school friends and you can’t drink on your mediation.
“This study isn’t just about epilepsy, it’s about how it effects the whole person. It goes through their family life, their learning, their sleeping. Many years ago when I had epilepsy they put me on Phenobarbital and I was like a zombie. It was the only drug there was and it would shut the brain down and knock you out. This study is looking for the best treatment for the child in the long run and it should show what’s better – for instance, if they’re on the medication or not.”
Family Engagement Officer for the CASTLE programme Sam Lyle said: “The CASTLE programme is a step forward for collaborative research acknowledging parents as experts in their children’s health. Someone with no qualifications has expertise because their children have epilepsy while an academic graduate new to epilepsy in children has different knowledge, so it breaks down normal barriers. The more consumer-focused that NHS services become, the more people are unable to ignore the people at the heart of the NHS: the patients.”
Chief Investigator for the study Professor Deb Pal, from King’s College London Institute of Psychiatry, Psychology and Neuroscience, said: “Patient and Public Involvement is absolutely central to the entire programme. It keeps a family focus on everything we do. Parents and young people have guided us in asking the right questions, meeting the right objectives, in designing all our study materials, in reviewing all our study procedures. I don’t think we would have made the choices we made and kept the research focus as pin sharp on patients in the NHS if we had been working without Patient and Public Involvement.”
Visit the CASTLE study website for details.