In Kenyans with active convulsive epilepsy who had similar characteristics to people with epilepsy in other parts of Africa,3,34
we found that the epilepsy treatment gap was 62% as measured by detection of AEDs in blood samples. This finding represents a reduction from 74% measured during a survey in 200310
and could be attributed to setting up an epilepsy clinic with a continuous supply of AEDs and sensitisation of the community. However, the sensitivity and specificity of self-reporting remained poor. The factors associated with reduced treatment seeking are different to those associated with reduced adherence to AEDs. Modifiable risk factors for failure to seek treatment are negative attitudes about biomedical treatment, payment for AEDs, and distance from health facilities providing AEDs. Adherence to AEDs could be improved by reduction of negative attitudes to epilepsy (panel
Panel. Research in context
We searched Medline (1966, to May, 2012), ISI Web of Science (1966, to May, 2012), and Cochrane reviews with the search term “epilepsy treatment gap”. Searches were restricted to human studies. We found 281 references, most of which we reviewed in a previous paper3
and a recent review.4
We reviewed the outstanding 31 references. We found that the epilepsy treatment gap was attributed to cultural beliefs, inadequate skilled manpower, cost of treatment, and unavailability of antiepileptic drugs.
This study showed that self-reporting of adherence to antiepileptic drugs (AEDs) might not be reliable in rural Africa, and that risk factors for the failure to seek biomedical treatment for epilepsy and the poor adherence to prescribed treatment are different. Treatment seeking could be improved by modification of attitudes to epilepsy and provision of free AEDs in health facilities near to the residence of the person with epilepsy. Adherence could be improved by changes in attitudes towards epilepsy.
People with epilepsy who held traditional animistic religious beliefs were less likely to seek biomedical treatment than were Christians and Muslims, possibly because of misconceptions and superstitions associated with epilepsy in Kilifi.35
People with epilepsy with negative beliefs and attitudes about biomedical treatment of epilepsy were less likely to seek treatment from health facilities, suggesting that modification of patients' beliefs and attitudes is an important step in improvement of treatment seeking.36,37
Other factors associated with failure to seek treatment were distance to health facilities and payment for AEDs. The geographical proximity of health services to people's homes is an important factor that affects use of health services, particularly in resource-poor settings where density of biomedical health facilities is often low. The 1997 Kenyan health policy strategic framework states that all households should have access to health services within a 5 km range.38
In KHDSS, there is a high density of biomedical health facilities within reach by people with epilepsy, but only KDH has an epilepsy clinic with a continuous supply of AEDs and AEDs other than phenobarbital. The erratic supplies of AEDs in the peripheral clinics (JAC, unpublished) might have reduced the use of these peripheral facilities. People with epilepsy who reported paying for AEDs were less likely to seek treatment than were people who did not pay. The cost of AEDs in peripheral facilities was 10 KES (US$0·13) for a 1-month supply of phenobarbital in 2008, whereas at KDH it was 40 KES ($0·51). This cost of AEDs, although small, is significant when combined with indirect costs of seeking care—eg, transport costs.
Of the epilepsy-specific factors, people with epilepsy who had seizures for more than 10 years might be less likely to seek treatment compared with people with disease of shorter duration because they had learnt to cope with their disorder. People with focal seizures were less likely to seek treatment than were those with generalised seizures, although focal seizures are associated with symptomatic causes and are more likely to be associated with behavioural problems.39
Most of the seizures were focal becoming generalised, and being aware at the onset of seizure might have made people less inclined to seek treatment because of the stigma. People with epilepsy and learning difficulties were less likely to seek treatment, perhaps because they were not brought to biomedical facilities by their families or because of their difficulties in understanding the importance of treatment.
Patient self-reporting using reliable and valid questionnaires is thought to be an efficient and cost-effective method to assess adherence, although some patients might underestimate or overestimate their adherence.40
We found that the sensitivity and specificity of self-reporting compared with detection of AEDs in blood samples was low, suggesting that self-reporting is not a reliable measure of adherence in people with epilepsy in this community and probably in many countries with low and middle incomes. This finding questions the reliability of data in systematic reviews of the epilepsy treatment gap.3,4
Furthermore, we did not find that the Morisky scale was useful for measuring adherence in this population. Although the scale has been used in other studies of epilepsy,28,29
it has not been compared with AED detection in blood. There was no significant difference in adherence based on blood samples among the different AEDs (data not shown), despite the different half-lives (phenobarbital, 48–168 h; phenytoin, 7–42 h; carbamazepine, 5–26 h).30
Non-adherence was associated with established epilepsy, which is in accord with previous reports that people with epilepsy who had taken AEDs for a longer duration were less likely to adhere.41
Non-adherence was also associated with negative beliefs and attitudes about epilepsy as reported previously.6
Our study had several limitations. Non-adherence was reported at only one timepoint as opposed to monitoring over time, which might capture variations such as differences in timing of administration, missing doses of AEDs, or taking AEDs just before clinical assessment.42
We did not study people with non-convulsive epilepsy since the survey was designed to capture only those with active convulsive epilepsy. Recall and reporting bias of self-reported answers might have occurred, and there were significant differences between people who gave blood samples for measurement of adherence and those who did not. This study was done in an area where we have been studying epilepsy since 2003, although the treatment gap is still 62%. We did not control for quality of care, which might play a part in determining health service use.
In this rural area of Kenya, almost two-thirds of people with epilepsy were not adequately treated and the sensitivity and specificity of self-reported adherence were poor. Modification of beliefs and attitudes and provision of a free and constant supply of AEDs to nearby health facilities could substantially reduce the treatment gap.