Community awareness of which seizure type should present to healthcare providers; a potential risk factor of the epilepsy treatment gap

Abstract Objective: the objective of this study was to assess the awareness of the community in Sudan of which seizure type(s) should present to health care providers.Methods: This is a cross-sectional descriptive internet-based survey that was conducted in Sudan during the period from January to April 2018, using google forms. The survey consisted of demographic data (age, gender, educational level), a statement evaluating participants’ sources of obtaining information regarding epilepsy, a statement assessing awareness about the primary care provider for people with epilepsy (PWE), and a statement describing the symptomatology of different seizure types in simple Arabic, asking what description(s) participants thought should present to health care providers. We included participants residing in Sudan, and those with a college degree or higher education. Four hundred sixty-seven participants completed the survey.Results: 467 participants were included, of whom, 279 (60%) were females. The mean age of participants was 28 years. Two-thirds of participants obtained their information from non-scientific sources. 84% of the participants were aware that doctors are the primary health care providers for people with epilepsy.The majority (92.%) of participants were aware that patients with symptoms corresponding to the generalized tonic-clonic seizure description should present to doctors, compared with two-thirds of participants for focal seizure symptom description, and only 30.6 % of participants for absence seizure symptom description.Conclusion: This study demonstrated poor awareness about the necessity of presentation for focal and absence seizures. We hypothesize that this lack of awareness may contribute to the epilepsy treatment gap, and we recommend further studies to examine this hypothesis.