Abstracts

Rationale: Women of Childbearing Age (WoCBA) with epilepsy face challenges in gaining access to relevant information related to their treatment at the right time and stage in their motherhood journey. The aim of this study was to provide insights into the experience of WoCBA with epilepsy.


Methods: A social media listening study was conducted across 6 countries (USA, UK, France, Germany, Spain, Italy; Figure 1). Posts and sites related to issues and unmet needs for WoCBA (15–49 years of age) with epilepsy related to their motherhood journey were sourced across public social media accounts, including X (formerly Twitter), forums, YouTube, blogs, Instagram, and Facebook over a 12-month period (Jan 2020–Jan 2021). The study aimed to identify key topics of conversation for WoCBA with epilepsy and to explore the patient conversation (through manual reading by expert language analysts) to extract key themes, unmet needs, and emotions in this patient population. A dual data capture methodology was used; conversations mentioning UCB Pharma products were excluded.


Results: A total of 245,000 posts referencing key terms associated with the motherhood journey were analyzed. Specific keyword filtering was applied to identify conversation around the key stages of the WoCBA with epilepsy motherhood journey: Unintentional & Planning Pregnancy, Conception & Fertility, Early/Late Pregnancy & Childbirth, Breastfeeding & Motherhood (Figure 2). Thematic analysis of these data revealed 4 key themes: (i) uncertainty and fear surround changes to a treatment regimen, as the process of balancing antiseizure medications (ASMs) is often lengthy and complex; (ii) fears and concerns around the safety of ASMs take on new meaning (additional concerns for safety of fetus and child development/childhood outcomes) for WoCBA with epilepsy, which is intensified by the disparity and lack of information from healthcare professionals (HCPs); (iii) seizure control is a priority but can be a difficult balance to achieve, as providing a safe environment for the fetus or infant becomes paramount; (iv) the motherhood journey is perceived to be challenging, with multiple obstacles or barriers to a safe and successful pregnancy, including the lack of consistent information.

Conclusions: WoCBA with epilepsy want to be empowered through knowledge and feel they need to be more proactive in finding comprehensive information (including information about ASMs) at the right time in their motherhood journey to increase their confidence in making decisions about their treatment. Often, relevant information is not provided or easy to obtain, WoCBA with epilepsy are given conflicting information, and questions related to epilepsy and pregnancy remain unanswered, leading to confusion and heightened anxiety. WoCBA with epilepsy may seek answers and support from sources other than their HCPs, including their peers. There is a need to better support WoCBA with epilepsy and their families and provide relevant information at the right stage and time, thus supporting a more informed and supportive motherhood journey experience. HCPs need more data to be better equipped with information they can provide to WoCBA with epilepsy.

Funding: UCB Pharma-sponsored