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Understanding the care needs of people with epilepsy

Study title

Assessing baseline factors, critical events and fatigue in long term neurological conditions


University Hospital Southampton, UK.

About the study

Many long term conditions, such as epilepsy, have an impact on a person’s quality of life. Their need for help and care can change at different times. This might mean that the resources they need to help them are not always available at the right time.

This study will look at the care needs of people with epilepsy, multiple sclerosis, motor neurone disease, Huntington’s disease or Parkinson’s disease. The aims are to:

  • Find out how to predict what a person’s care needs will be, and at what point
  • Identify events that might lead to an unplanned increase in care needs or an unexpected hospital visit
  • Understand the impact of fatigue for people with these conditions

When will this study be recruiting?

The study is recruiting now, until January 2021.

What will participants be asked to do?

We will ask you to complete two short surveys, either online, on paper or over the telephone. Each survey will usually take less than 20 minutes.

The first survey asks about the things that you feel affect the amount of care you, or a person with epilepsy you care for, needs. The second survey asks about the impact of fatigue for people with epilepsy.

Who can take part?

You can take part if you:

  • Are over 18 years old
  • Have a diagnosis of epilepsy or you care for someone with a diagnosis of epilepsy
  • Live in the UK

Who is conducting the research?

This study is being conducted by a research team based at University Hospital Southampton. It is led by Sarah Fearn, a Senior Research Fellow. The chief investigator is Dr Chris Kipps, a consultant neurologist.

Who has reviewed this study?

The National Research Ethics Service – Research Ethics Committee South Central – Hampshire A has reviewed the study and granted it ethical approval.


If you would like to find out more about this study and would like to receive a participant information sheet, please contact Sarah Fearn:

Email: S.Fearn@soton.ac.uk
Phone: 07876 818404.

Find more information on the study and a link to the online survey: 

Find out more

Event Date: 
Tuesday 12 May 2015 (All day)

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