Abstract
PurposeThe percentage of people who are diagnosed with epilepsy (diagnostic gap), access, receive and adhere (treatment gap) to anti-seizure medication (ASM) in low- and middle- income countries remains low. We explored the epilepsy care cascade, measured the diagnostic and treatment gaps, and examined socio-demographic factors associated with adherence to ASMs in rural South Africa. MethodsUtilizing a population-based cohort of 311 people with active convulsive epilepsy (ACE) residing in rural northeastern South Africa, a questionnaire was administered to examine associations between demographic and socioeconomic factors and the epilepsy treatment gap. Blood was taken to measure levels of ASMs. ResultsOf the 311 individuals diagnosed, 93 % of individuals reported being previously told they had epilepsy and 94 % reported previously attending a health facility for their epilepsy. ASMs were detected in 138 individuals (76 %) and optimal levels were detected in 67 individuals, resulting in a treatment gap of 63 % (95 % confidence interval [95 %CI]: 56 %–70 %). Self-reported specificity of ASM use was 23 % (95 %CI: 12–39 %) and individuals ≥18 years were significantly more likely to report taking ASM than children and were significantly (p = 0.011) more likely to be adherent. ConclusionMost people with epilepsy in rural South Africa had been previously diagnosed with epilepsy and had accessed care for epilepsy, yet the level of ASM adherence remained low, significantly lower amongst children. Understanding ways of improving knowledge of and adherence to ASM in rural South Africa is necessary, especially amongst children. The epilepsy care cascade can be useful in identifying gaps in care and targeting interventions to reduce these gaps.
Highlights
Epilepsy is a common neurologic disorder that currently affects more than 50 million people globally, with at least 80 % of cases found in low- and middle-income countries (LMICs) [1,2]
In a 2008 cross-sectional survey, we identified individuals within the Agincourt Health and Socio-demographic Surveillance System (HDSS) population with active convulsive epilepsy (ACE), defined as having ≥2 unprovoked convulsive seizures occurring more than 24 h apart and ≥1 seizure occurring in the 12 months preceding the study or currently taking anti-seizure medication (ASM) due to epilepsy [21]
All 82,818 individuals that constituted the Agincourt HDSS population were screened for ACE, and an adjusted prevalence of 7.0/1000 individuals (95 %CI: 6.4–7.6) was determined after considering the sensitivity of the screening tool [22]
Summary
Epilepsy is a common neurologic disorder that currently affects more than 50 million people globally, with at least 80 % of cases found in low- and middle-income countries (LMICs) [1,2]. Whilst pharmacologic treatment results in seizure freedom in roughly 70 % of patients with epilepsy [3], the number of individuals diagnosed with epilepsy and receiving and correctly taking anti-seizure medication (ASM) in LMICs remains low. A 2014 review found that 59 % of people with epilepsy in sub-Saharan Africa do not receive any treatment and only 33 % of patients who do receive treatment are managed appropriately [4]. The epilepsy treatment gap (ETG), defined as the proportion of people with active epilepsy whose seizures are appropriately controlled over the total number of people with active epilepsy in a given.
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