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£1.3m grant for epilepsy self-management trial

Posted on 30/04/2013
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Researchers at King’s College London’s Institute of Psychiatry in collaboration with King’s College Hospital NHS Foundation Trust and Epilepsy Action, have been awarded £1.3m by the National Institute for Health Research Health Technology Assessment (NIHR HTA) Programme, to assess the effectiveness of self-management education for adults with epilepsy.

In the UK 600,000 people live with epilepsy. Despite improvements in epilepsy treatments, 30% of people with epilepsy continue to experience seizures, which may significantly affect their quality of life.

The trial, led by Professor Leone Ridsdale, a neurologist at King’s Institute of Psychiatry, will look at how effective a programme called ‘Self-Management education for adults with poorly controlled epILEpsy’ (SMILE) is in helping those with poorly controlled seizures to learn about dealing with their epilepsy.

Professor Ridsdale says: “People with other long-term conditions, like diabetes, are offered self-learning packages, which have been tested by means of randomized controlled trials. Despite having a long-term condition which can impact severely on their thoughts, feelings and social life, people with epilepsy have not routinely been offered opportunities to learn how to manage their condition in the context of their daily lives.”

The workshops help people achieve a better understanding of the causes of and treatments for epilepsy and identify factors that can help or hinder them improve their own self-management. People become more able to recognise patterns in the occurrence of their seizures and better able to deal with some of the stressful aspects of having epilepsy. People attending the groups hear about and learn from the experiences of other people with epilepsy, and are given a course book containing the information from the workshop as well as other sources of information about living with epilepsy.

SMILE is based on a German programme called MOSES which has been delivered to small groups of patients and carers in some European countries for 13 years. Whilst the programme has been translated into English, the research team recognise that the delivery of the programme needs to be modified, so as to make it relevant and acceptable in the UK context, and evaluated.

The specific aims of the research programme are:

  • To test the hypothesis that SMILE will lead to improved quality of life, and other outcomes, like participants’ own sense of control of their epilepsy, at 12 months follow-up.
  • To describe users’ views of SMILE, including barriers to participation and the perceived benefits of the intervention.
  • To measure the cost-effectiveness and implications of SMILE for NHS service use.

Margaret Rawnsley, Research Officer at Epilepsy Action, says: “We are delighted to collaborate with King’s College London on this project.  The views of people with epilepsy are an important part of this study. Among other things, we will work with the team to ensure people with epilepsy are involved in the research in a meaningful way. We firmly believe that this study has the potential to benefit people living with epilepsy.”

Professor Laura Goldstein, clinical neuropsychologist at King’s Institute of Psychiatry and co-principal investigator says: "Our study offers the first opportunity in the UK to evaluate this programme systematically. We hope that this exciting research will have a lasting impact and are delighted that Epilepsy Action is working with King’s to develop this."

The research group at King’s includes Professor Paul McCrone, health economist, Professor Sabine Landau, statistician,  Professor Myfanwy Morgan, sociologist of health and Professor Mark Richardson, epileptologist and Head of the Department of Clinical Neurosciences. Up to 20 neurologists in the UK with an interest in epilepsy have agreed to act as local principal investigators inviting their patients to participate. Workshop leaders will include Epilepsy Nurse Specialists and EEG Technicians working at King’s College Hospital NHS Foundation Trust and other centres in SE England.

The research is funded through the NIHR Health Technology Assessment (HTA) Programme with additional support from the King’s College Hospital NHS Foundation Trust and the NIHR Biomedical Research Centre for Mental Health at the South London and Maudsley NHS Foundation Trust and King’s College London.

For further information, please contact Seil Collins, Press Officer, King’s College London, Institute of Psychiatry. Email: seil.collins@kcl.ac.uk or tel: 0044 207 848 5377

National Institute for Health Research Health Technology Assessment (NIHR HTA) Programme

1. The National Institute for Health Research Health Technology Assessment (NIHR HTA) programme funds research about the effectiveness, costs, and broader impact of health technologies for those who use, manage and provide care in the NHS. It is the largest NIHR programme and publishes the results of its research in the Health Technology Assessment journal, with over 600 issues published to date. The journal’s 2011 Impact Factor (4.255) ranked it in the top 10% of medical and health-related journals. All issues are available for download, free of charge, from the website. The HTA Programme is funded by the NIHR, with contributions from the CSO in Scotland, NISCHR in Wales, and the HSC R&D Division, Public Health Agency in Northern Ireland.www.hta.ac.uk.

2. The National Institute for Health Research (NIHR) is funded by the Department of Health to improve the health and wealth of the nation through research. Since its establishment in April 2006, the NIHR has transformed research in the NHS. It has increased the volume of applied health research for the benefit of patients and the public, driven faster translation of basic science discoveries into tangible benefits for patients and the economy, and developed and supported the people who conduct and contribute to applied health research. The NIHR plays a key role in the Government’s strategy for economic growth, attracting investment by the life-sciences industries through its world-class infrastructure for health research. Together, the NIHR people, programmes, centres of excellence and systems represent the most integrated health research system in the world. For further information, visit the NIHR website (www.nihr.ac.uk).

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