What matters most to carers of adults with epilepsy?

Core outcomes for family caregivers of adults with epilepsy

Epilepsy does not only affect patients, but also their family members and close friends (often called carers). Their quality of life can be impacted too. Many specialist centres are working on ways to keep track of and improve the quality of life of people with epilepsy. Because we know that a patient’s quality of life is linked to their carer’s quality of life, we think it is important to support both.

To do this better, we need to know what we need to measure and how. This is called a Core Outcome Set. There are Core Outcome Sets for patients, but not for carers of people with epilepsy.

The study

That is why we will start a Delphi survey. Delphi surveys aim to reach consensus or agreement of different viewpoints. In three rounds, we will ask participants belonging to different groups to share their opinion with us. The groups: 

• people with lived experience
• healthcare professionals
• researchers

We will ask participants to complete online surveys between October and December 2025. 

This project will result in a Core Outcome Set for carers of adults with epilepsy

After the final check, we will have a final Core Outcome Set for carers of adults with epilepsy. The research team will then look at how we might best measure these outcomes, by selecting existing, validated questionnaires. Or, if there are no suitable questionnaires, we may develop new tools. These may then be used in the clinical care pathways of hospitals or sites that wish to do so.

Routine measurement of outcomes that matter to carers of people with epilepsy, may help improve the support provided to carers, as well as the quality of life of both patients and carers.