EPSET Study Home Page

What is the EPSET study?

We would like to invite you to take part in the The EPilepsy outcome Set for Effectiveness Trials Project (EPSET), but before you take part it is important for you to understand why this study is being done and what taking part will involve.

When researchers design research studies to test treatments for health conditions they need to measure outcomes that are important and relevant, to decide if the treatments are safe and effective.  For people with epilepsy, outcomes might be things like 'how many seizures you have', 'whether a seizure means you need to go to hospital' or 'whether a treatment causes side effects'.

The EPSET study needs to hear your views on which outcomes are so important that they should always be measured in studies for adults with epilepsy. We call these the Core Outcome Set (COS). If all future studies looking at treatments for adults with epilepsy measure these core outcomes, and measure them in similar ways, the results of the studies can be easily compared and combined. Thismay help new, effective treatments become available to patients more quickly and may benefit all patients with epilepsy in the long term.

Who can complete the surveys?

To decide which outcomes are most important, researchers need to get everyone's opinion and try to reach agreement, or “consensus”, on the most important outcomes.  We want to hear from the following groups:

1. Adults with epilepsy (18 years and older)

2. Advocates for adults with epilepsy (including family members and care-givers)

3. Healthcare professionals who regularly assess and treat adults with epilepsy

4. Researchers who assess the effectiveness of treatments for adults with epilepsy.

How to complete the surveys?

Before completing the survey, please ensure you have read the relevant Participant Information document available at https://www.epsetproject.org/participant-information.

This is the first of two online surveys trying to reach agreement on the most important outcomes to measure for research involving adults with epilepsy. 

On the following pages you will see several outcomes listed. This list has been developed by looking at what is already measured in epilepsy research, and what is said to be important by people living with epilepsy from interviews and focus groups. Please score each outcome, by indicating how important you think it is to measure when deciding if a treatment is effective.  Each outcome can be scored on a scale of 1-9 (not important 1-3, important but not critical 4-6, critical 7-9) or 'unable to score'.  Please hover over each outcome with your cursor for further text explaining what we mean by each outcome term before scoring. You can also leave comments about why you have scored an outcome in a particular way, but this is optional.

Many thanks for sharing your views on which outcomes are the most important to measure for researching involving adults with epilepsy.

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