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Table 1 Adaptation of the epilepsy screening questions to the local context

From: Comprehensive management of epilepsy in onchocerciasis-endemic areas: lessons learnt from community-based surveys

Questions in scientific language [37] Questions explained and adapted to the context Remark
1. Loss of consciousness and/or micturition and/or drooling?
Sensitivity: 87.8%
Specificity: 90.3%
Does the person suddenly fall for a short period of time (few seconds to minutes)? During such falls, is there saliva (foam) on the mouth and/or urine on the victim? - Sudden fall implies that the victim has no time to hold onto a support before falling.
- Micturition and drooling are usually absent during syncope, dizziness or hysteria but typically present during generalized tonic-clonic seizures.
2. Absences or sudden lapse of consciousness for a short duration?
Sensitivity: 50.0%
Specificity: 86.6%
Does the person suddenly stop talking/eating/working for a short period of time (few seconds), and does not respond when you call him/her? After that, does she/he resume to what she/he was doing? - Questions must relate to common activities such as farming, talking and eating because it is the easiest way to notice abnormal events.
- If the PWE cannot recall the episodes of brief lapse of consciousness meanwhile it is reported by the caretakers, it is most likely an absence.
3. Jerky or uncontrolled movements of one or more limbs (convulsions), of sudden onset and lasting for a few minutes?
Sensitivity: 69.5%
Specificity: 79.9%
Does the person get sudden shaking of the whole body or just part of the body (hands, legs) and this then calms down after a short while? Generalized tonic-clonic seizures are easily recognized and may have a local appellation. It could be helpful to ask the interviewee to mimic the abnormal movements. Ask also whether the person experiences isolated movements of the head (nodding seizures). Importantly, do not suggest answers.
4. Sudden onset of brief body sensations, hallucinations or illusions be they visual, auditory or olfactory?
Sensitivity: 37.8%
Specificity: 80.5%
While fully awake, does the person often complain of abnormal body sensations, or seeing/ hearing/ smelling things that are not really there for a short period (few seconds to minutes)? Non-motor seizures are difficult to explain. The best approach is to create a scenario of visual or auditory hallucinations (seeing people who are not present, hearing voices). In some cases, the symptom is well known but had never been attributed to epilepsy. Use the local word for hallucinations when screening, if it exists.
5. Had it been said before that the subject had epilepsy or had presented epileptic seizures?
Sensitivity: 70.7%
Specificity: 94.8%
Ask the question using the local word for persons with epilepsy in that community. Most families will readily answer this question. However, more tact is needed to pull out cases that are generally hidden by the family because of associated stigma [64].