Study to better quality of lives
ATEAM of researchers from Edge Hill University will play an instrumental role in a six-year long national study which aims to improve quality of life for children with epilepsy.
The Changing Agendas on Sleep, Treatment and Learning in Epilepsy (CASTLE) research project will work with children with Rolandic epilepsy and their families to research how their learning, sleep, behaviour, self-esteem and mood are impacted by the condition and its treatment.
Professor Bernie Carter and Dr Lucy Bray at Edge Hill’s faculty of Health and Social Care are leading the qualitative and public and patient involvement aspects of the study which weave through all stages of the project.
Professor Bernie Carter said: “Standard medical treatment involves using medicines to reduce the seizures the child experiences, but the medicine which has been used for the last 40 years is not 100% effective in stopping seizures, plus it has associated side effects including sleepiness.
“The CASTLE project’s clinical trial will test this older medicine (carbamazepine), against a newer drug (levetiracetam) and against no drug treatment.
“The parents will also access an adapted sleep behavioural intervention for their children.
“The project ultimately aims to improve treatment and quality of life for children with the condition.”
The CASTLE project starts on June 1 2017 and will run until 2023.
It is supported by a £2.73m programme grant, funded by the National Institute of Health Research and led by King’s College London.
Edge Hill University researchers will be interviewing children and their families from across the country about their understanding and experiences of the medicines and interventions used in the clinical trial, their perception of the benefits and risks associated with them, and impact of the treatments on their lives.
Dr Lucy Bray said: “The idea for this project came directly from parents whose children have epilepsy, and child and parent priorities will be a focus throughout.
“The families will guide the programme of research through steering groups which will help to inform our methods, recruitment and how findings are shared.”