Pregnancy-related knowledge and information needs of women with epilepsy: A systematic review

For women with epilepsy (WWE), pregnancy is complicated by considerations such as the potential teratogenicity of antiepileptic drugs (AEDs) versus the risks of having seizures during pregnancy. However, qualitative research suggests that many WWE remain uninformed about the risks associated with epilepsy and pregnancy and may, therefore, be making uninformed decisions about their families. The objectives of this review were to determine the level of patient knowledge, their informational needs, and whether these needs concerning pregnancy and childbirth issues are met among WWE. Electronic databases searched were PsycINFO, MEDLINE, Embase, CINAHL, and Web of Science. Studies were included if they used quantitative methods to survey WWE aged 16 years or older about their knowledge, access to information, or informational needs specifically regarding epilepsy and pregnancy. Twelve studies were identified and assessed for research standards using the Quality Index. Overall Quality Index score was only 7.1 out of 14, indicating significant design limitations of many included studies, including highly selective sampling methods and the use of unvalidated outcome measures. There was a paucity of studies investigating specific areas of women's knowledge and information needs. Overall, WWE reported adequate awareness, but limited knowledge, of key issues regarding pregnancy and childbirth. Across studies, many women reported not receiving information about these issues. Evidence suggested that many WWE wanted to receive more information - particularly about the risks of AEDs for their offspring - well in advance of choosing an AED or planning pregnancy. Women aged under 35 years wanted the most information. Preconception counseling received by many WWE appears insufficient, risking uninformed decision-making about pregnancy. Further research is needed to investigate the barriers that WWE face in accessing, receiving, and retaining appropriate information.