Background

People with brain tumours often experience epilepsy, and seizures can have a major impact on quality of life, affecting independence, employment, sleep and everyday activities. While differences in cancer outcomes have been linked to social deprivation, less is known about whether seizure control and quality of life outcomes also vary according to people’s circumstances and access to healthcare.

A team of neurosurgeons, epilepsy specialists, cancer researchers and public health experts are developing a study to investigate these questions. Using anonymised healthcare data from Wales, the researchers will examine seizure and quality of life outcomes in people with brain tumour-related epilepsy and compare findings with similar patient groups in the Netherlands to identify opportunities for improving care.

Who can get involved?

People with lived experience of brain tumours and/or tumour-related epilepsy, including as a caregiver or loved one. Although the study will use healthcare data from Wales, input is welcomed from anyone affected by a brain tumour and epilepsy, regardless of where they live.

What will you do?

Join a 90 minute discussion group with brainstrust and lead researcher Dr Harsh Bhatt and share your views on the proposed research to help ensure it focuses on the issues that matter most to people affected by brain tumours and epilepsy. Feedback will help the researchers understand which outcomes are most important and ensure the study is relevant, meaningful and grounded in real-life experiences.

This will be a small, informal online discussion, and no research experience or specialist knowledge is needed.

Please be advised this meetup will be held via Zoom. You will receive the Zoom link and Meeting ID with your ticket.