Women with Epilepsy Across the Lifespan

 

 

Study Description:

This study aims to investigate whether women with epilepsy (WWE) receive care for gender-specific and sex-specific health issues as recommended in guidelines. The focus areas include fertility and family planning, pre-, intra-, and post-partum care, hormonal therapies (contraceptives, menopause, and transgender health), teratogenicity, sexuality, hormonal influence on seizures, and bone health. The study addresses the significant challenges faced by WWE, such as the lack of understanding, diverse opinions, non-standardized practices, and varied information provided to WWE. To gain insights, the study plans to engage WWE across Canada, listening to their experiences and understanding their health-related concerns. Recruitment will be carried out at the Epilepsy Monitoring Unit (EMU) and epilepsy clinics at London Health Sciences Centre, involving collaboration with epilepsy community organizations for questionnaire distribution. The questionnaires will be offered to patients during routine clinical visits or as outpatients in other English and Spanish speaking countries around the world. For example, Spain, Argentina, and Mexico. The questionnaires will be given as paper copies or as an online version using a hyperlink or a QR code. The survey will be accessible for 12 months, and outreach will extend to diverse epilepsy patient communities through local, national, and international organizations. Participants will provide informed consent before completing the questionnaire. There will be no follow-up.

 

Inclusion criteria:

  • Adults (18+) who have been diagnosed with epilepsy and/or psychogenic non-epileptic seizures/attacks/events (PNES/A/E)
  • Participants who identify as female or were assigned the female sex at birth.

 

Exclusion criteria:

  • Adults (18+) who do not identify as female or were not assigned the female sex at birth,
  • Participants younger than 18 years,
  • Participants not diagnosed with epilepsy and/or psychogenic nonepileptic seizures/attacks/events (PNES/A/E)
  • Participants who cannot complete the survey in English or Spanish.

 

Principal Investigator: Dr. Ana Suller Marti

Mariam Elnazali (Research Assistant) and Suzan Brown (Research Coordinator) are collecting completed consent forms and surveys from the EMU.