*This study is currently closed and not recruiting any new participants*
The Core Health Outcomes In Childhood Epilepsy (CHOICE) study is developing the first ever core outcome set for childhood epilepsy research. This involves seeking consensus agreement on which aspects of health and quality of life are most important to measure for children with the most common type of epilepsy. We are using methods advocated by the COMET Initiative. The protocol describing the procedures for the CHOICE study is freely available.
We need families of children with rolandic epilepsy, clinicians and other people working with children with rolandic epilepsy (sometime called benign epilepsy with centro-temporal spikes or BECTS) to participate in an online survey to select which aspects of health and quality of life should be measured in future childhood epilepsy research e.g. seizures, mental health, school attendance.
Who are we & what are we doing?
The CHOICE study is coordinated by researchers based at King’s College, London. The team involves clinicians, researchers and parents of children with epilepsy from England and Wales. An ‘outcome’ is some aspect of a person’s health that is measured to compare treatments for specific health conditions. Most research in epilepsy focuses on measuring the effect of anti-epileptic medication on seizures as an outcome. However, we think it’s also important to include other outcomes too that might be affected by seizures or anti-epileptic medication such as a child’s learning, sleep, mental health, school and social life.
We will be asking which outcomes parents, young people and professionals think are more important to measure for children with rolandic epilepsy (also known as benign childhood epilepsy with centro-temporal spikes). To do this we are conducting an online Delphi Survey.
How does a Delphi Survey work?
A Delphi survey is a way to seek consensus agreement over 2-3 rounds of responses. If you take part in the survey, you will be asked to rate different aspects of health on a scale from not important to critical based on your personal view of what you think is important to measure for childhood epilepsy. The survey is anonymised.
After the first round we will summarise the responses and ratings and participants will be invited to take part in round 2. In round 2, participants see the results and will be asked to rate the outcomes again. We will see what level of agreement there is after Round 2. If there is not yet agreement, then we will have a third round of the survey.
After the survey a small number of diverse participants will gather for a face-to-face meeting. This meeting will be to discuss any outcomes that did not reach consensus and to ratify a core outcome set.
Can children and young people take part?
Children aged between 8-16 years old with a diagnosis of rolandic epilepsy can take part. If you are a parent and decide to register on the form below we will give you more details on how your child can take part. This will include providing you with a child friendly information sheet and further instructions. When a child registers to take part on the survey, they can select the option ‘child/young person’ group. Only one email per participant can be registered on the survey. If your child would like to take part, please provide them with an email address they can use. We value young people’s opinions on this survey.
Take part in the this study
This study is currently closed to recruitment. We will post back here when we have the final results! Please look at our other projects if you are interested in taking part in CASTLE.