Background Epilepsy is one of the most common neurological conditions globally, estimated to constitute 0.75% of the global burden of disease, with the majority of this burden found in low- and middle- income countries (LMICs). Few studies from LMICs, including much of sub-Saharan Africa, have described the incidence, remission or mortality rates due to epilepsy, which are needed to quantify the burden and inform policy. This study investigates the epidemiological parameters of convulsive epilepsy within a context of high HIV prevalence and an emerging burden of cardiovascular disease. Methods A cross-sectional population survey of 82,818 individuals, in the Agincourt Health and Socio-demographic Surveillance Site (HDSS) in rural northeast South Africa was conducted in 2008, from which 296 people were identified with active convulsive epilepsy. A follow-up survey was conducted in 2012. Incidence and mortality rates were estimated, with duration and remission rates calculated using the DISMOD II software package. Results The crude incidence for convulsive epilepsy was 17.4/100,000 per year (95%CI: 13.1-23.0). Remission was 4.6% and 3.9% per year for males and females, respectively. The standardized mortality ratio was 2.6 (95%CI: 1.7-3.5), with 33.3% of deaths directly related to epilepsy. Mortality was higher in men than women (adjusted rate ratio (aRR) 2.6 (95%CI: 1.2-5.4)), and was significantly associated with older ages (50+ years versus those 0-5 years old (RR 4.8 (95%CI: 0.6-36.4)). Conclusions The crude incidence was lower whilst mortality rates were similar to other African studies; however, this study found higher mortality amongst older males. Efforts aimed at further understanding what causes epilepsy in older people and developing interventions to reduce prolonged seizures are likely to reduce the overall burden of ACE in rural South Africa.

Background

The disability adjusted life year (DALY) is a composite measure of disease burden that includes both morbidity and mortality, and is relevant to conditions such as epilepsy that can limit productive functioning. The 2010 Global Burden of Disease (GBD) study introduced a number of new methods and definitions, including a prevalence-based approach and revised disability weights to calculate morbidity and new standard life expectancies to calculate premature mortality. We used these approaches, and local, population-based data, to estimate the burden of convulsive epilepsy in rural South Africa.

Methods & Findings

Comprehensive prevalence, incidence and mortality data on convulsive epilepsy were collected within the Agincourt sub-district in rural northeastern South Africa between 2008 and 2012. We estimated DALYs using both prevalence- and incidence-based approaches for calculating years of life lived with disability. Additionally, we explored how changing the disease model by varying the disability weights influenced DALY estimates. Using the prevalence- based approach, convulsive epilepsy in Agincourt resulted in 332 DALYs (95% uncertainty interval (UI): 216-455) and 4.1 DALYs per 1,000 individuals (95% UI: 2.7-5.7) annually. Of this, 26% was due to morbidity while 74% was due to premature mortality. DALYs increased by 10% when using the incidence-based method. Varying the disability weight from 0.072 (treated epilepsy, seizure free) to 0.657 (severe epilepsy) caused years lived with disability to increase from 18 (95%UI: 16-19) to 161 (95%UI: 143-170).

Conclusions

DALY estimates are influenced by both the methods applied and population parameters used in the calculation. Irrespective of method, a significant burden of epilepsy is due to premature mortality in rural South Africa, with a lower burden than rural Kenya. Researchers and national policymakers should carefully interrogate the methods and data used to calculate DALYs as this will influence policy priorities and resource allocation.

Background: Epilepsy is a common neurological disorder, with over 80 % of cases found in low-and middle-income countries (LMICs). Studies from high-income countries find a significant economic burden associated with epilepsy, yet few studies from LMICs, where out-of-pocket costs for general healthcare can be substantial, have assessed out-of-pocket costs and health care utilization for outpatient epilepsy care.

Methods: Within an established health and socio-demographic surveillance system in rural South Africa, a questionnaire to assess self-reported health care utilization and time spent traveling to and waiting to be seen at health facilities was administered to 250 individuals, previously diagnosed with active convulsive epilepsy. Epilepsy patients' out-of-pocket, medical and non-medical costs and frequency of outpatient care visits during the previous 12-months were determined.

Results: Within the last year, 132 (53 %) individuals reported consulting at a clinic, 162 (65 %) at a hospital and 34 (14 %) with traditional healers for epilepsy care. Sixty-seven percent of individuals reported previously consulting with both biomedical caregivers and traditional healers. Direct outpatient, median costs per visit varied significantly (p < 0.001) between hospital (2010 International dollar ($) 9.08; IQR: $6.41-$12.83) and clinic consultations ($1.74; IQR: $0-$5.58). Traditional healer fees per visit were found to cost $52.36 (IQR: $34.90-$87.26) per visit. Average annual outpatient, clinic and hospital out-of-pocket costs totaled $58.41. Traveling to and from and waiting to be seen by the caregiver at the hospital took significantly longer than at the clinic.

Conclusions: Rural South Africans with epilepsy consult with both biomedical caregivers and traditional healers for both epilepsy and non-epilepsy care. Traditional healers were the most expensive mode of care, though utilized less often. While higher out-of-pocket costs were incurred at hospital visits, more people with ACE visited hospitals than clinics for epilepsy care. Promoting increased use and effective care at clinics and reducing travel and waiting times could substantially reduce the out-of-pocket costs of outpatient epilepsy care.