Largest Childhood Epilepsy Study Worldwide Reveals Common Concerns Among Children, Parents And Healthcare Professionals

Main Category: Epilepsy
Also Included In: Pediatrics / Children's Health;  Neurology / Neuroscience
Article Date: 12 Jul 2007 - 1:00 PDT

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27th International Epilepsy Congress, Singapore -Survey[i] data presented by Eric Hargis, Secretary General, International Bureau for Epilepsy (IBE) shed light on the common concerns and fears of children living with epilepsy, their carers and healthcare professionals. Nine out of 10 (94%) healthcare professionals said that advice on reducing seizures is the most frequent information request from parents and children, followed by information on cognitive (79%) and physical (75%) side effects of antiepileptic drugs. Furthermore, parents are concerned about the ability of their child to keep up with school work (35%); learn new things (27%) and participate in sports / other hobbies (27%).

"Achieving seizure freedom with minimum side effects must be the primary goal for the management of epilepsy in children and adolescents to provide the best possible potential for neurological, cognitive and psychosocial development and educational outcomes. " said Professor Alexis Arzimanoglou, Head of the Epilepsy Program, University Hospital Robert Debré, Paris, France. He continued, "This survey, conducted across 16 countries, highlights that a stigma still surrounds epilepsy, with up to a third of children and almost a quarter of parents/carers reluctant to inform people about their condition for fear of being treated differently."

As part of their ongoing work to increase understanding and awareness of epilepsy, UCB today announces the launch of Live Beyond Epilepsy, an international initiative designed to enhance the lives of people with epilepsy, those who live with them and those who care for them.

Launched today to support Live Beyond Epilepsy, 'BE Inspired: The Inspiring Experiences of People Living with Epilepsy' is a booklet that captures the hopes, challenges and dreams of people with the condition through artwork and prose. By sharing the personal messages and experiences of people with epilepsy, support and encouragement can be provided to other people living with the condition.

"UCB Pharma is committed to enhancing the lives of people with epilepsy, their families and carers, and through this new initiative - Live Beyond Epilepsy - is working to create greater awareness and understanding of the condition." said Dr. Kenneth Saké, Associate Director, Global Medical Affairs, UCB Pharma.

Today, there are around 50 million people with epilepsy in the world, making it one of the most common neurological disorders.[ii] Every year there are 2.4 million new cases globally and at least 50 percent of new cases begin in childhood or adolescence. ii

The Future in Mind survey is the largest of its kind in children with epilepsy, involving over 1,000 responses from children and teenagers with epilepsy, carers and healthcare professionals from 16 different countries.i

About Future in Mind Survey

'Future in Mind' is an educational initiative by the International Bureau for Epilepsy (IBE) to raise awareness of the considerations and consequences of childhood epilepsy. The IBE survey of children and teenagers with epilepsy was designed to assess the perceptions of people directly involved with childhood epilepsy. This is the first time that the views of children and teenagers with epilepsy, parents, caregivers and healthcare professionals from around the world have been gathered as part of a single survey on epilepsy. This report presents findings of the survey, including over 1,000 responses from children and teenagers with epilepsy, parents, caregivers and healthcare professionals from 16 different countries. 'Future in Mind' is supported by UCB.

About the International Bureau for Epilepsy

The IBE, with 113 member associations based in 88 countries worldwide, exists to improve the social condition and quality of life of people with epilepsy and those who care for them. IBE has a vision of the world where everywhere ignorance and fear about epilepsy are replaced by understanding and care. Find out more by contacting ibedublin@eircom.net or by visiting the website http://www.ibe-epilepsy.org

About Live Beyond Epilepsy

Live Beyond Epilepsy is an epilepsy awareness and education initiative from UCB. It brings together a series of innovative programmes designed to improve the lives of people with epilepsy, those who live with them and those who care for them.

The artistic work in 'Be Inspired: The Inspiring Experiences of People Living with Epilepsy' was drawn together from entries to the 'Freedom in Mind' (http://www.freedominmind.com) initiative. Freedom in Mind is a joint initiative of UCB and the International Bureau for Epilepsy. This initiative calls upon people with epilepsy to express what freedom from seizures means to them, through pictures, poems, readings, music and films.

About UCB Pharma SA

Headquartered in Brussels (Belgium), UCB (http://www.ucb-group.com) is a leading global biopharmaceutical company dedicated to the research, development and commercialisation of innovative pharmaceutical and biotechnology products in the fields of central nervous system disorders, allergy/respiratory diseases, immune and inflammatory disorders and oncology - UCB focuses on securing a leading position in severe disease categories. Employing more than 8400 people in over 40 countries, UCB achieved revenue of 2.5 billion euro in 2006. UCB is listed on the Euronext Brussels Exchange and owns 87.6% of Schwarz Pharma.

References

[i] Hargis E., Baker G., Arzimanoglou A., Glauser T., Pellock J., Hsih M.S., Mounfield H. and the International Bureau for Epilepsy, Understanding the real-life effects of epilepsy in children: 'Future in Mind' - an international survey of parents, healthcare professionals and children Presented at the 27th International Epilepsy Congress, 8 - 12 July 2007, Singapore

[ii] World Health Organisation. Epilepsy Facts. Available here [Last accessed May 2007]