Keto-Start: Co-design of a programme to support initiation, adherence and continuation of ketogenic diet therapy for children and young people with epilepsy and their parents/carers (Keto-Start)

Research summary

Around 33,600 children and young people with epilepsy in the UK have seizures (“fits”) that continue even though they take medication. This reduces their quality of life and costs £16,931 per child over 18 months. Ketogenic diet therapy (KDT), high-fat, low-carbohydrate diets, are one of the few treatment options for these children. KDT can lower the number of seizures in around 40% of children and improve their quality of life, but they must follow a strict diet. A 3-month trial is needed to work out whether KDT reduces a patient’s seizures. However, 55% of children referred for KDT start the diet, and 25% of these stop before completing the 3-month trial Our aim We want to help an extra 200 children per year start and stay on KDT for 3 months (or longer if helpful), to possibly reduce their seizures and improve their quality of life. This could save £900,000 in costs associated with epilepsy. What will we do? We will meet children and young people with epilepsy from four hospitals in the UK who have thought about starting or who have started KDT, and their families. We will listen to the difficulties they have faced and learn what would have made the diet easier. We will ask other families to share their experiences through an online survey. We will talk to staff who work in KDT teams and watch them at work. We will search for published studies on people’s experiences with KDT. We will bring our findings together in a short film to inspire families and healthcare professionals to work together to design tools to help people start and stay on KDT. Our findings may be helpful for other complex treatments too. This study is funded by National Institute for Health and Care Research, and The Rosetrees Trust.

Principal Investigator

Ruth Fisher

Contact us

Email: childrensresearch@ouh.nhs.uk

IRAS number

337576