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of everyone affected by epilepsy

Defining patient preferences and priorities for treatment options and outcomes in epilepsy

Project lead – Professor Tony Marson,
Walton Centre for Neurology and Neurosurgery, Liverpool.

Epilepsy Action is a partner in this important study. The research is funded by a Research for Patient Benefit grant

Abstract

Epilepsy is the most common serious neurological condition, affecting around 350,000 adults in England. Most people with epilepsy receive treatment with anti-epileptic drugs. However a number of non-drug interventions are also available. The wide range of treatments and their potential for harm as well as benefit, mean treatment decisions for people with epilepsy are often complex. Currently, appreciation of what people with epilepsy themselves regard as the key issues around management of their condition, and the key outcomes, rests on an extremely thin evidence base.

This research aims to inform decision-making around treatment options for epilepsy by:

  • defining the views of people with epilepsy about the possible trade-offs between benefits and harms of the various treatment options.
  • defining their views about relevant and important treatment outcomes.

Two linked studies will be conducted to explore the views, understandings and preferences of different groups of adults with epilepsy. Qualitative research methods will be used to focus in depth on the views of a relatively small number of individuals; and a large-scale survey and a research method called a ‘Discrete Choice Experiment’ will examine the generalisability of these initial findings to the wider UK epilepsy community.

The work will address the important shortfalls in existing evidence and is firmly endorsed by a recent stakeholder consultation conducted by Epilepsy Action. It will inform the future epilepsy research agenda by ensuring that it addresses interventions and outcomes important to people with epilepsy themselves.

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