for the design and delivery of future interventions

Dear friends
 
We need your help!

For What?
IBE is conducting a survey in Europe to understand how well informed women of childbearing age are on the risks involved in epilepsy and pregnancy and how well this information is understood. We need you to complete our survey.

Why?

This is a very important area and there is a need to better understand the situation in order to ensure that women are better informed on the risks involved. We need to establish current demographics and the shortfall in knowledge in this very important area for both the mother and her unborn child.

The Survey

The survey is the first part of a Europe-focussed project on Epilepsy & Pregnancy, the results of which will inform on design and delivery of future interventions through the development of a multi-faceted toolkit. If Phase One is successful, the programme will be rolled out in other regions.

What will the results of the survey tell us?
The result of the survey will inform us of the following:
  1. The experiences of women with epilepsy of child bearing age
  2. What are the areas that the IBE need to intervene in
  3. What our intervention programme should look like
The data obtained from the survey, which are collected anonymously, will be collated and analysed. The scenario obtained from this analysis may provide the basis for communication activities, including publication in an appropriate scientific journal.

You can help us if
you are living in Europe. If you are willing to participate in the survey, it will take no more than 8 minutes to complete. The survey is completely anonymous, and we will not be able to identify respondents.
 
Closing date: Monday 8th March 2021
Your input will be invaluable to us, so please do help by giving us 8 minutes of your time.

Martin Brodie, IBE President
Francesca Sofia, IBE President-elect

Supported by a grant from Sanofi Aventis Groupe

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* 1. How old are you?

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* 2. From the list below, can you please tell us, are you:

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* 3. How many years have you spent in education?

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* 4. What is your highest level of education?

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* 5. What is your current employment status? Please choose one option from the list below.

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* 6. How many years has it been since you were first diagnosed as having epilepsy?

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* 7. In which European country do you live?

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* 8. Are you a member of an epilepsy support group for people with epilepsy or an epilepsy organisation?

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* 9. Are you under the care of a neurologist/specialist professional in epilepsy/GP with special interest in epilepsy?

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* 10. Have you ever been pregnant? 

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* 11. Were you taking anti-seizure medication at the time of the pregnancy?

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* 12. Was the pregnancy planned or unplanned?

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* 13. Did the pregnancy reach full term?

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* 14. If you answered No to question 13, was the pregnancy terminated electively (by your choice)?

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* 15. How many living children do you have? Please write the number in the box below.

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* 16. Have you ever been given by someone else, or found for yourself, information about becoming pregnant while living with epilepsy? 

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* 17. Were you given or did you find this information before a first pregnancy or only after that?

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* 18. In respect of the information you have received, how easy was it to access?

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* 19. In respect of the information you have received, how easy was it to understand?

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* 20. In respect of the information you received, how helpful did you find it?

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* 21. Did the information make a difference to your decisions about pregnancy and, if so, what? Please write your answers in the box below. Your comments are greatly valued.

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* 22. Who provided the information? Please tick as many boxes as apply.

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* 23. Have you ever received information from a medical practitioner in relation to the need to consider contraception while taking anti-seizure medication?

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* 24. If you answered Yes to question 23, which of the following provided that information? Please tick as many boxes as apply to you.

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* 25. Have you ever been referred by a neurologist or a GP to additional social and medical supports available in your community for women with epilepsy?

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* 26. Have you been made aware of the risks associated with taking some anti-seizure medication while pregnant?

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* 27. Have you ever been advised to plan pregnancy by a medical professional?

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* 28. If you answered Yes to question 27, which type of medical professional provided the advice? Tick as many boxes as apply.

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* 29. If you were pregnant tomorrow, would you contact a medical professional before making any decision about whether or not to stop taking prescribed anti-seizure medication? If this question does not apply to you, please move to the next question.

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* 30. Are you aware of the registries that exist in Europe/UK for women with epilepsy who are pregnant?

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* 31. In your opinion, is clear and concise information available for women with epilepsy who are considering becoming pregnant? If this question does not apply to you, please move to the next question. 

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* 32. Would you avoid becoming pregnant if you were on anti-seizure medication? If this question does not apply to you, please move to the next question.

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* 33. Would you consider the information given to you on the issue of epilepsy and the risks associated with pregnancy have helped you to decide whether to become pregnant?

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* 34. Is there any other information that you have found to be helpful and, if so, what was this? Please write your response in the table below. Your comments are highly valued.

We would like to thank you very much for your help with this survey.
If you would like to find out more about the risks associated with epilepsy and pregnancy, please visit the website of the International League Against Epilepsy.

IBE European Survey of Epilepsy & Pregnancy is supported by a grant from Sanofi-Aventis Groupe
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