Unmet needs of women with epilepsy living in rural low- and middle-income countries: The experience of the Bolivian Chaco

Abstract

Objective: Epilepsy affects approximately 70 million people worldwide, with 80% living in low- and middle-income countries (LMICs), where many people with epilepsy (PWE) go undiagnosed or untreated. Over the last few decades, many efforts have been made worldwide to reduce the treatment gap (TG) in LMICs. However, while Western countries emphasize personalized antiseizure medications (ASM) management in Women with Epilepsy (WwE), little data are available on this topic in LMICs. Our study aimed to assess healthcare standards regarding epilepsy in women from a rural area of Bolivia.

Methods: We interviewed a sample of WwE living in rural communities of the Bolivian Chaco, previously identified by community health workers (CHWs) and/or general practitioners (GPs) and who had been prescribed at least one ASM. A previously validated questionnaire was used addressing epilepsy management and maternal health.

Results: We interviewed 54 women aged 7-64 years. Among them, 18 (33.3%) had experienced at least one pregnancy. Of these seven (38.9%) continued ASM treatment during pregnancy, but only two received specific counseling. One woman spontaneously discontinued treatment during the pregnancy. There were 15 pregnancies while on treatment, with ASM dosage adjusted in only two cases. No major congenital malformations were reported in the offspring.

Significance: This pilot study explored the reproductive health challenges faced by WwE in rural Bolivia. The lack of data in LMICs highlights the need for awareness campaigns to ensure an adequate management of WwE in these areas.

Plain language summary: Women with epilepsy face additional challenges related to their reproductive and social life. There are few data on the management of epilepsy in women living in low- and middle-income countries. We performed a study in the rural areas of Bolivia to explore the standard of care of women with epilepsy. We found a lack of systematic preconceptional counseling in these women. However, there were few negative outcomes reported in their children, which may relate to the small sample size, the variable rates of responses to specific questions, and conscious concealment.

Keywords: antiseizure medications; preconception; pregnancy.