Fast track — ArticlesThe social and economic impact of epilepsy in Zambia: a cross-sectional study
Introduction
Among neuropsychiatric disorders, epilepsy contributes substantially to the global burden of disease.1 80% of the 40 million people with epilepsy worldwide reside in low-income regions2 where resources for care are extremely limited. In sub-Saharan Africa, although basic diagnostic services, such as neuroimaging and electroencephalography, were available in 70–80% of countries surveyed in 2004,3 such services are located almost exclusively in urban areas, often in association with private hospitals, and are de facto not available to most people with epilepsy.4 The treatment gap (proportion of people with active epilepsy who warrant but who are not receiving treatment) among people with epilepsy in sub-Saharan Africa remains at more than 90%,5 despite the affordability of phenobarbital (less than US$10 per person per year). For individuals who do not respond to or who cannot tolerate phenobarbital, second-line drugs are often not available. This enormous treatment gap in the face of at least one reasonably priced drug is likely to be associated with a lack of trained healthcare providers and traditional belief systems that direct care-seeking outside of medical facilities.3, 6, 7 Adherence to chronic medication use might also be further limited by the reality that for people with seizure disorders, especially in less developed regions, the condition encompasses far more than a simple medical problem requiring tablets. Traditional medical systems in such regions might be more adept at addressing these larger issues even if their treatments fail to improve seizure control.8
Untreated seizures in low-income regions have significant consequences in terms of medical morbidity and mortality. Severe burns, fractures, and other seizure-related traumas occur commonly, especially among individuals with long-standing untreated epilepsy.9 In Tanzania, a follow-up study undertaken in the pre-HIV era showed that over a 30 year period 80% of people with epilepsy who had been receiving treatment at an established clinic died, with around 50% of deaths related to status epilepticus, burns, or drowning.10 The psychosocial and economic consequences of epilepsy in less developed countries are generally acknowledged to contribute substantially to the burden of this highly stigmatised disease.11 People with epilepsy in sub-Saharan Africa may have fewer educational, marital, and employment opportunities.12, 13, 14, 15, 16, 17, 18 Epilepsy-associated stigma and loss of personhood could even exacerbate the effects of regional famine and food insecurity.19 A cross-cultural review of epilepsy-associated stigma and stigma sequelae lend support to reports of a detrimental effect of epilepsy on health-related quality of life.20
Although qualitative and experiential reports indicate substantial negative social and economic consequences associated with epilepsy in low-income regions,14, 21, 22 little quantitative systematic research has been done. To assess the social and economic effect of living with epilepsy in sub-Saharan Africa, we completed a cross-sectional study of adults with epilepsy in Zambia.
Section snippets
Participating sites
Four outpatient sites providing epilepsy care as part of their primary and multi-specialty healthcare services were included in this study—two urban, one rural, and one mixed site. The urban sites included the outpatient specialty clinics at the University of Zambia's University Teaching Hospital in Lusaka and four small free-standing clinics scattered throughout Lusaka associated with Chainama Hills Hospital. Monze Mission Hospital, located on the main tarmac road between Lusaka and
Results
A total of 338 people (47% men) were enrolled and interviewed during the study period (table 1). Chronic medical problems among controls included asthma (37%), diabetes mellitus (28%), hypertension (24%), and rheumatic heart disease (11%). Just over a third of people with epilepsy had evidence of physical stigmata (usually burn scars) as per the interviewers' assessment (table 2). The mean stigma score for cases was 1·8 versus 0·4 among controls (p<0·0001) and the groups differed significantly
Discussion
The findings of this study lend support to the long-held supposition that people with epilepsy in developing regions carry a heavy burden of stigma with associated poor social and economic status. This cross-sectional study matched individuals by age, sex, and site of care and allowed us to assess the differential burden of epilepsy relative to non-stigmatised, chronic, health conditions. Future work to investigate epilepsy stigma versus other disease stigma is needed.
Since many people with
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