Objective:

Provide insights into experiences of women of childbearing age with epilepsy.

Background:

Women with epilepsies (WWE) face challenges in gaining access to relevant information related to treatment at the right time/stage in their motherhood journey.

Design/Methods:

Social media listening study across 6 countries (USA/UK/France/Germany/Spain/Italy). Posts/sites related to issues/unmet needs for WWE on the motherhood journey were sourced across public social media accounts from Jan 2020-Jan 2021.

Results:

245,000 posts referencing key terms associated with the epilepsy motherhood journey were analyzed. Specific keyword filtering identified conversation around key stages of the journey: preventing&planning pregnancy, conception&fertility, early/late pregnancy&childbirth, breastfeeding&parenthood. Thematic analysis revealed four key themes: (i) WWE feel uncertainty/fear around treatment changes, as the process of balancing antiseizure medications (ASMs) is often lengthy/complex; (ii) their fears/concerns around safety of ASMs take on new meaning (additional concerns for safety of fetus/child development/childhood outcomes), which is intensified by disparity/lack of information from healthcare professionals (HCPs); (iii) seizure control is a priority but difficult to balance, as providing safe environment for fetus/infant becomes paramount; (iv) the motherhood journey is perceived as challenging, with multiple obstacles/barriers to safe/successful pregnancy, including lack of consistent information.

Conclusions:

WWE want to be empowered through knowledge and feel they need to be more proactive in finding comprehensive information at the right time in their motherhood journey to increase their confidence in making treatment decisions. Often, relevant information is not provided by clinicians/unavailable/difficult to obtain. WWE are given conflicting information, while questions related to epilepsy/pregnancy remain unanswered, leading to confusion/heightened anxiety. WWE may seek answers/support from sources other than HCPs, including peers. There is a need to better support WWE/families and provide relevant information in plain language at the right stage/time, supporting a more informed motherhood journey experience. HCPs need more data to be better equipped with information on the motherhood journey for WWE.