What matters most to carers of adults with epilepsy?

Epilepsy affects family members and carers/caregivers too. That’s why in this study, they are trying to identify how their lives are impacted to improve their quality of life. Many specialist centres are working on ways to keep track of and improve the quality of life of people with an epilepsy. Because it's known that a patient's quality of life is linked to their carer's - they think it's important to support both.

To do this better, they 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 they’ll 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 them. The groups: 

• people with lived experience

• healthcare professionals

• researchers

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

Who’s suitable? Those 18 years or over. Must be able to read and write in English or Dutch. 

Participant payment type and amount: A gift voucher to the value of €30 when all three rounds are completed.

Fill in the form here (sein.nl/en/research/co-care) to take part