Introduction

Epilepsy is considered one of the oldest conditions known to mankind and is still the most common neurological disorder affecting all age groups, as it is estimated that up to 70 million patients worldwide have a diagnosis of epilepsy at a given time. The WHO estimates that 8 persons/1000 worldwide have a diagnosis of epilepsy (Banerjee et al., 2009El-Tallawy et al., 2013Farghaly et al., 2013Ngugi et al., 2010). The reported incidence, prevalence, and burden of the disease worldwide showed many disparities in the reported studies (Banerjee et al., 2009). The prevalence of epilepsy is higher in developing countries compared to developed countries (Perucca et al., 2001Preux and Druet-Cabanac, 2005). It is estimated that 90% of patients with epilepsy live in developing countries in Africa, Asia, and Latin America (Houinato et al., 2013). At the clinical level, epilepsy is similar in developing and developed countries, but the extent to which patients with epilepsy are recognized, investigated, and managed is different. Epidemiology, aetiology, socio-cultural, and economic factors all contribute to these differences (Bharucha, 2003).

Epilepsy does not distinguish between geographic, racial, or social boundaries; however, the aetiology of seizures is multi-factorial in any given individual and is best thought of as an interaction between the genetically determined seizure threshold, underlying predisposing pathologies or metabolic abnormalities, and acute precipitating factors (Guberman, 1999).

Epidemiologic studies are necessary to define the health burden of epilepsy; to establish public health and health care priorities; to identify education and service needs; to provide information needed for prevention, early detection, and treatment; and finally to promote effective health care and support programmes for people with epilepsy (Thurman et al., 2011). In developed countries, researchers easily find epidemiology-related information due to the availability of universal health care systems, routine medical registration, and medical records in various database systems. However, in developing countries the availability of health care systems and medical registration is still lagging. Accordingly door-to-door personal interviews are the main source of data needed for epidemiological studies (El-Tallawy et al., 2013).

We conducted this community-based door-to-door study to assess the main epidemiological parameters of epilepsy in the Qena governorate as a representative of Upper Egypt.

Subjects and methods

This study was a part of a cross-sectional community-based epidemiology programme for neurological diseases (namely stroke and epilepsy) implemented in the south Upper Egypt, Qena governorate. The study protocol was approved by the local ethics committee of Qena University.

Study area

The Qena governorate is characterized as the narrowest part of the Nile river valley. It forms a green land strip of only 1–2 km on either sides of the river, bordered by the west and east deserts on both sides. The total surface area of the Qena governorate is estimated to be 10,798 km2, which represents approximately 1.1% of Egypt's total surface area. Qena has an estimated population of approximately 3 million people according to the national Egyptian census, 21.4% of them live in urban areas and 78.6% in rural areas. The Qena governorate consists of 2 cities and 11 districts. Qena and Nag Hammadi are considered as urban areas. Qena city is the capital of Qena governorate. It is situated on the east bank of the Nile. It is most famous for its proximity to the ruins of Dendera. The population is 230,392. Nag Hammadi is located on the west bank of the Nile in the Qena governorate. It is an industrial city that produces sugar and aluminium. It has a population of approximately 30,000. The 11 districts are considered rural areas, which are distributed around the Nile and where most of the people are farmers.

Study timing

The study was conducted over a 2-year period from September 1, 2011 to August 31, 2013. August 31, 2013 was considered the prevalence day. Thus, any positive subject fulfilling the diagnostic criteria of epilepsy before the prevalence day at any time of their lives was considered as a prevalent case, and any subject who gave a history suggestive of epilepsy that began during the survey period was considered an incident case of epilepsy.

Sampling methodology

First stage: selection of the study sites

A random sample of 10 study areas was selected randomly from the Qena governorate. First, we randomly selected 3 of the 11 districts according to their geographic location. Then, we selected two villages (areas) from each district, including Nagada (in the west bank of Nile), Qift (in the east of Nile), and Dishenna (in the north bank of the Nile), with a total of six villages considered as rural populations. Second, we randomly selected two areas each from Qena and Nagh Hammadi for a total of four urban areas according to local security safety.

Second stage

An initial diagnosis was based on a screening questionnaire (discussed next). The survey team comprised 10 social workers (education level of at least 10 years) who used the screening questionnaire, two neurologists, and a psychiatrist (master's degree with at least 5 years of experience). In families with several members with suspected epilepsy, we picked only one member for further assessment in the third stage. If this patient was proven to have epilepsy, he or she was considered to have a positive family history. The suspected cases were referred to Qena University Hospital for further assessment and confirmation of the diagnosis. This team received 3 weeks of training on how to perform the protocol before starting the study.

Third stage

The patients referred for final assessment at Qena University Hospital were subjected to a full neurological history and examination in the Neuropsychiatry department at Qena University Hospital. Electroencephalography, CT and/or MRI were performed for various cases for further assessment and confirmation of the epilepsy diagnosis.

Instruments

A previously used Arabic translated screening questionnaire (Khedr et al., 2013) was used in this study, with the same methodology adapted from Khedr et al. (2013). The initial diagnosis was based upon a general two-part screening questionnaire translated into Arabic with Part I recording socio-demographic details and Part II involving a modified epilepsy screening questionnaire (Haerer et al., 1986) with exclusion of the last question of febrile convulsion. The screening questionnaire was pretested in the outpatient clinic of Assiut University Hospital on a sample of 25 patients with epilepsy and 25 age- and sex-matched control patients who had joint arthritis without manifestations of epilepsy. The sensitivity and specificity of the questionnaire were 95% and 88%, respectively. The screening questionnaire consisted of 12 questions requiring yes or no answers. Each question was related to the presence or absence of a specific symptom in the last year (active cases) or prior years. Questions asked about the occurrence of (1) repeated abnormal movement in one part of the body; (2) paroxysms of rhythmic, bilateral synchronous movements of both upper and lower limbs associated with disturbance of conscious level; (3) a noticeable march, course, and speed of abnormal movement or sensation; (4) bouts of abdominal pain; (5) repeated spells of unexplained abnormal or violent behaviour or screaming attacks; (6) sleep-walking; (7) abnormal tossing or tonicity in sleep, repeated swallowing motion or smacking of lips, bed wetting, or spots of moisture, perhaps tinged with blood on the pillow; (8) falling-out spells; (9) repeated spells of blackouts with fainting; (10) repeated spells of absentmindedness, drooling or unusual body movements or jerks; (11) repeated spells in which they missed something of what was being said or taking place (repeated spells when they would stare, be confused, or unable to respond to any one for a few moments); or (12) paroxysms of strange speech, delusion or hallucinations. Subjects who screened positive were selected for the present study.