New health information resources to support women with epilepsy before, during and after pregnancy have been launched at an event held at RCSI University of Medicine and Health Sciences today. The resources were developed as part of the EpiKNOW project, led by RCSI’s School of Population Health, in response to significant gaps in reliable information identified through recent research.

Findings from a study undertaken by the EpiKNOW team show that less than half of international online resources offer reliable information to women with epilepsy during preconception, pregnancy, and postpartum stages. More than a quarter (28%) of available resources were assessed as offering ‘poor’ information, highlighting a need for accurate, sensitive and easy-to-understand information.

Women with epilepsy in Ireland have long reported a lack of accessible, tailored health information relating to reproductive health. While many can expect normal pregnancy outcomes, reproductive decisions can be complex. The EpiKNOW project has responded to this need by developing a suite of new resources in collaboration with healthcare professionals and women with lived experience of epilepsy. These include practical guides on medication management, seizure safety during pregnancy and postpartum care.

“Women with epilepsy deserve clear, confident information when making decisions about their reproductive journey. Too often women are left navigating complex decisions without sufficient information,” said Dr Aisling Walsh, principal investigator on the study, whose team recently published findings from the project in Epilepsy & Behavior.

Lisa Whelan, a representative from the study’s public and patient involvement (PPI) panel, added: “It's wonderful to be able to give guidance to the women with epilepsy and healthcare professionals on what women with epilepsy are looking for to ensure maximum support for these women.”

Attendees at today’s showcase event heard directly from women with epilepsy, clinicians, and researchers, and explored the findings and tools developed through this initiative. The EpiKNOW project was funded by the Health Research Board (HRB) and co-supported by Epilepsy Ireland and the HSE National Women and Infants Health Programme.