Survey assessing the reproductive healthcare and information needs of women in Europe of childbearing age living with epilepsy

Abstract

Objectives: To understand the extent to which women of childbearing age (WoCBA) are aware of the issues associated with epilepsy and pregnancy and identify unmet reproductive healthcare and information needs.

Methods: WoCBA with epilepsy completed a 34-question online survey (January to March 2021), including sections on demographics, clinical information, and access to reproductive health care. The survey was available in English, Croatian, Czech, Georgian, German, Italian, Polish, Russian and Spanish.

Results: Overall, 865 responses were received and included in the analysis. Most respondents were aged 20–39 years (77.0 %), were married (43.6 %) and 63.2 % had been diagnosed with epilepsy for more than 10 years. Over half of respondents (53.9 %) had previously been pregnant, with 75.5 % reporting that they took antiseizure medication (ASMs) during pregnancy. Most (67.6 %) respondents had received information about epilepsy and pregnancy with 43.4 % of respondents receiving this information before their first pregnancy. Although 71.5 % found the information ‘very helpful’ or ‘somewhat helpful’, some respondents found the information frightening, confusing, or difficult to access. Most respondents (74.1 %) had been made aware of the risks of taking some ASMs while pregnant; 59.8 % had been advised to consider pregnancy planning, however, 52.7 % were not provided with information on contraception while taking ASMs. Over half (56.9 %) of respondents felt that clear and concise information was not available for women with epilepsy who were considering becoming pregnant.

Conclusions: There is a need to improve education and support for WoCBA with epilepsy to help them with decision-making, planning and managing pregnancy.