New International Bureau for Epilepy Survey Highlights ‘What Really Matters’ to People With Epilepsy Today

ROME, August 29, 2011 -

Weight gain revealed as most bothersome unwanted effect associated with epilepsy treatment

A new, on-going European survey to assess what really matters to people living with epilepsy today has been commissioned by the International Bureau for Epilepsy (IBE), an international umbrella organisation of national epilepsy patient groups.  This survey marks the 50^th anniversary of the IBE and this five decade landmark provides a timely opportunity to uncover the key issues faced by patients and carers in 2011 with the hope of improving standards of care in the future.

Presented today at the International Epilepsy Congress, the preliminary results of the survey, drawn from over 120 patients in 17 countries, show that weight gain is considered to be the most bothersome unwanted effect associated with epilepsy medication.  Dizziness and slowing of mental agility were listed as being the next most disturbing unwanted effects.  In general, survey respondents acknowledged that they experienced side effects with their current epilepsy treatment, although stated that they were not unduly bothered by this, and many stated that they simply forget to raise the issue of unwanted effects with their doctor or nurse.  However, the majority of respondents stated that they ’sometimes’ worry about the long term effects of their treatment.    

Also revealed in the initial results were issues relating to concordance with treatment.  The majority of respondents admitted that they forgot to take their epilepsy treatment as prescribed once a month and the majority of respondents felt that they found it ‘not very easy’ to remember to take their epilepsy treatment.

 ”We believe this type of people with epilepsy-centric insight is vital in helping us to improve epilepsy care in the future”, points out IBE President Mike Glynn.  ”Enormous progress has been made over the past five decades in epilepsy care and treatment, but there is still a long way to go. Sadly, epilepsy still continues to take its toll, impairing the physical, psychological and social functioning of those affected and their families.  We must listen to people with epilepsy and acknowledge what they really feel about their epilepsy and associated treatment approaches in order improve their daily lives.”

The survey uses a web-based questionnaire that has been translated into 12 languages.  The easy-to-complete questionnaire is distributed through the IBE’s country chapters via e-mail and probes into patients’ personal experiences of the impact of epilepsy, their epilepsy management and the aspects of epilepsy and its care that matter most to them.    

The survey was funded through an unrestricted educational grant provided by Eisai.  The field work commenced in July 2011 and will end mid-September this year.  Full survey results will be available before the end of 2011.

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Notes to Editors

About the IBE

The International Bureau for Epilepsy (IBE) is a worldwide umbrella organisation, with a powerful global network of 122 members in 92 countries, providing a platform for the representation of epilepsy and promoting understanding and knowledge of the condition. IBE Members are lay organizations, with membership accessible to all.

Members are grouped regionally, in line with the regional boundaries adopted by the WHO, so that every member of IBE is also a member of a Regional Committee.

50 years focused on epilepsy

Created in 1961, this year marks the 50^th anniversary of the IBE and the Golden Jubilee of its foundation.  Throughout the past five decades, the IBE has focused on improving epilepsy care and remains committed to finding new and innovative solutions to the problems impacting people with epilepsy and their families world-wide.

For further information please visit the IBE’s web site www.ibe-epilepsy.org

Eisai in epilepsy

Eisai is committed to developing and delivering highly beneficial new treatments to help improve the lives of people with epilepsy. The development of anti-epileptic drugs (AEDs) is a major strategic area for Eisai.

About Eisai

Eisai is one of the world’s leading R&D-based pharmaceutical companies and has defined its corporate mission as “giving first thought to patients and their families and to increasing the benefits health care provides,” which we call human health care (hhc).

Eisai concentrates its R&D activities in three key areas: neuroscience; oncology and vascular / immunological reaction.

With operations in the U.S., Asia, Europe and its domestic home market of Japan, we employ more than 11,000 people worldwide. In Europe, Eisai undertakes sales and marketing operations in over 20 markets, including the United Kingdom, France, Germany, Italy, Spain, Switzerland, Sweden, Ireland, Austria, Denmark, Finland, Norway, Portugal, Iceland, Czech Republic, Hungary, Slovakia and the Netherlands.

For further information please visit Eisai’s web site www.eisai.com

Media contacts, Eisai Europe Ltd, Cressida Robson (+44-7908-314-155 / Cressida_Robson at eisai.net), Tonic Life Communications, Helen Swift / Benjamyn Tan (+44 774 7111217 / +44 7792 034 191), Benjamyn.tan at toniclc.com, Helen.swift at toniclc.com, International Bureau For Epilepsy, Ann Little (+353 1210 8850 / edublin at eircom.net)