A quality of care assessment for women of childbearing potential with epilepsy in Bhutan: An observational study

• Published in: Epilepsy & behavior Vol. 156; p. 109819
• Main Authors: Mastick, Maya L., Tshering, Lhab, Dema, Ugyen, Chhetri, Bikram, Dorji, Chencho, Nirola, Damber K., Subedi, Puja, Lhamo, Sonam, Diyali, Kiran, Chodden, Sonam R., Ham, Andrew S., Mateen, Farrah J.
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01-07-2024
• Subjects: Adolescent; Adult; Anticonvulsants - therapeutic use; Bhutan; Cohort Studies; Epilepsy; Epilepsy - diagnosis; Epilepsy - therapy; Female; Humans; Pregnancy; Pregnancy Complications - therapy; Prospective Studies; Quality of care; Quality of Health Care; Women; Young Adult; Bhutan; Women; Pregnancy; Bhutan; Epilepsy; Quality of care
• ISSN: 1525-5050; 1525-5069; 1525-5069
• DOI: 10.1016/j.yebeh.2024.109819

•82 Bhutanese women with active epilepsy (WWE) were studied for quality of epilepsy care.•The QUIET tool was used to identify priority issues for WWE of childbearing age.•95% of WWE took two or more antiseizure medications (ASMs) concurrently, of which most were first generation ASMs.•35% of WWE (and 53% of pregnant WWE) used betel nut (doma, quid).•A quality-of-epilepsy-care tool, refined and targeted to WWE in lower-income countries, is needed.
In lower-middle income countries such as Bhutan, the treatment gap for epilepsy is over 50% as compared to a treatment gap of less than 10% in high-income countries. We aim to analyze the quality of epilepsy care for women of childbearing potential in Bhutan using the Quality Indicators in Epilepsy Treatment (QUIET) tool, and to assess the usefulness of the tool’s section for women with active epilepsy (WWE) in the Bhutanese setting.
A prospective convenience cohort was enrolled in Thimphu, Paro, Punakha, and Wangdue, Kingdom of Bhutan, in 2022. Bhutanese women of childbearing potential at the time of enrollment (18–44 years old) were evaluated for the diagnosis of active epilepsy and underwent a structured survey-based interview with Bhutanese staff. Participants were surveyed on their epilepsy, pregnancy, and antiseizure medicine (ASM) histories. The clinical history and quality of epilepsy care of adult WWE were assessed using a section of the QUIET tool for women, an instrument originally developed by the U.S. Department of Veterans Affairs to analyze the quality of epilepsy care for American adults.
There were 82 Bhutanese WWE of childbearing potential, with mean age of 30.6 years at enrollment (range 18–44, standard deviation (SD) 6.6) and mean age of 20.3 years at epilepsy diagnosis (range 3–40, SD 8.0)). 39 % (n = 32) had a high school or above level of education, and 42 % (n = 34) were employed. 35 % (n = 29) reported a seizure within the prior week, and 88 % (n = 72) reported a seizure within the prior year. 49 % (n = 40) of participants experienced > 100 lifetime seizures.
All but one participant took antiseizure medications (ASMs). At enrollment, participants presently took no (n = 1), one (n = 3), two (n = 37), three (n = 25), four (n = 11), or over five (n = 5) ASMs. The most common ASMs taken were levetiracetam (n = 40), phenytoin (n = 27), carbamazepine (n = 23), phenobarbital (n = 22), and sodium valproate (n = 20). 61 % of all WWE took folic acid. Of the 40 previously pregnant WWE, eight (20 %) took folic acid during any time of their pregnancy. 35 % (n = 29) used betel nut (doma, quid) and 53 % (n = 21) of pregnant WWE used betel nut during pregnancy.
Based on data about WWE participants’ ASM, supplement, and substance use, our study identified the high use of first generation ASMs (including valproate), frequently in polytherapy, and betel nut use as treatment gaps in women of childbearing potential age with active epilepsy in Bhutan. To address these gaps for locations such as Bhutan, we propose modifications to the QUIET tool’s “Chronic Epilepsy Care for Women” section.