Institution
University of Liverpool and Bangor University UK
About the study
For most people with epilepsy, treatment for their seizures involves taking anti-epileptic drugs. However, a number of other treatment options are becoming increasingly available. We know very little about what people with epilepsy themselves consider important in terms of the management of their condition. For example, we know very little about how people with epilepsy decide whether or not a treatment is beneficial for them, or not. In this study, we want to try to understand better what people with epilepsy consider important, both in terms of possible treatment options and the results of those treatments.
The information that people provide as part of this study will help to ensure that healthcare services in the future include treatment options and results that people with epilepsy themselves have identified as important.
When will this study be recruiting?
We will be recruiting to this study up until the end of November 2012.
What will participants be asked to do?
Participants will be asked to take part in an interview with a researcher from the University of Liverpool (Adele Ring). During the interview you will be asked to talk about your experience of having epilepsy and any treatment and healthcare you have received so far. You will also be asked for your views about healthcare and managing epilepsy. The interview could take approximately two hours. You will be asked to give permission for the interview to be audio recorded and you will be asked to complete a consent form before the start of the interview. Your participation would be completely voluntary and you would be free to stop the interview and withdraw from the study at any time.
Who can take part?
People living in the following regions: north-west England (Cumbria, Lancashire, Merseyside and Cheshire); north-east England (Northumberland, Durham); and Yorkshire.
We are interested in talking to people who have only recently been diagnosed as having epilepsy. So, we are looking for adults (aged 18 years and over) diagnosed with epilepsy at least three months ago but not longer than 12 months ago, and who are also currently taking anti-epileptic drugs (AEDs).
If you are interested in taking part, we will ask you to answer some questions designed to check that you are eligible to do so.
The interview will be conducted in English and you will be required to sign a study consent form before taking part.
Who is conducting the research?
The study is a collaboration between Epilepsy Action and academic researchers at Liverpool and Bangor Universities. Professor Tony Marson from Liverpool University and The Walton Centre for Neurology and Neurosurgery is the principal investigator and the clinical lead investigator. Professor Ann Jacoby at Liverpool University is the lead investigator.
Who has reviewed this study?
The study has been reviewed by and received approval from: NRES Research Ethics Committee North West - Preston [REC reference: 11/NW/0191]
The University of Liverpool [UoL reference: UoL000702]
The Walton Centre for Neurology and Neurosurgery R & D Office [WCNN reference: RG015/11]
University Hospital Birmingham R & D Office [UHB reference: RRK4231]
Salford Royal NHS Foundation Trust R & D Office [SRFT reference: 2011/158neuro (73389/GM)]
Interested?
If you think you might be interested in taking part in this research and would like to be sent further information about the study, please contact Adele Ring on 0151 794 5739 or email: adeler@liverpool.ac.uk
Thank you very much for reading this information.
In order to continue this important work, we need your help. Find out how you can make a regular or single donation to support research at Epilepsy Action
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