I – Introduction
The purpose of this questionnaire is to standardize information on the epilepsy studies. It was developed through collaborative work involving the Institute of Neurological Epidemiology and Tropical Neurology of Limoges (France), the Pan-African Association of Neurological Sciences and the International League Against Epilepsy (Commission on Tropical Diseases, 1993-1997).
II – Objectives
This questionnaire will be widely used in various tropical and subtropical regions. It was developed in a modular structure and comprises nine sections : demographic data, screening, confirmation of diagnosis, natural history of the seizure disorder, past medical history, clinical examination, paraclinical examinations, etiology, treatment. It investigates 4 different objectives:
III – How to use the questionnaire
The open brackets must be filled with the codes indicated in the questionnaire. The other questions must be answered in text language and will be coded later in the right column. This method allows to investigate with more freedom and greater accuracy. When the asked question needs a quantitative answer and this answer is not known, then the investigator should let the brackets empty.
III – 1 – Demographic data
This provides the means to localize a specific subject (the address should be quoted very precisely), the professional activity and the period of stay in the study region. For the question D17, the definition of the rural-urban environment may change depending on the region of the study: the usual definition in France takes the threshold at 2 000 inhabitants. Although this may not perfectly apply, we propose to use this definition. Depending on the situation this definition may however be modified.
III – 2 – Screening
This can be filled by a non medical investigator. However, it is important that all field-investigators should be trained and have a working knowledge of the different seizure types. If one of the answers is positive, the investigator must go on filling in the questionnaire and the subject must be examined by a physician to confirm the epileptic nature of the attack(s).
III – 3 – Confirmation
This section must be filled in by a physician to confirm the diagnosis of epilepsy. The clinical description of the attack(s) should be precised (foaming at the mouth, loss of bladder control, movements …). If not, the physician can state if the attack(s) occurred in a particular situation, as part of an ongoing disease, or if the attack was an isolated seizure. If epilepsy is confirmed, the questionnaire must be continued.
III – 4 – Natural history of the seizure disorder
This section should allow the possibility to describe the variety and the age of the epileptic seizures of the study subject. The question N1 looks for active epilepsy i.e. a subject who has had at least one seizure within the last 5 years, whatever treatment he may have had. The official document of the International League Against Epilepsy which classifies the definition of active epilepsy, the different classifications of seizures, as well as the guidelines for epidemiological studies is to be found in the appendix.
III – 5 – Past medical history
The questions concern the family history of epilepsy, and the personal history with an emphasis on the pregnancy history of the subject’s mother, birth and psychomotor development, infantile diseases and neurological sequaelae due to these diseases and the period before the appearance of this sequaelae.
III – 6 – Clinical examination
The general state of health of the subject must be assessed by investigator and is defined as: poor if there is a loss of weight with asthenia, and difficulties in daily activities, average if there is asthenia or loss of weight but no problem in daily activities, good if there is no weight loss and no asthenia.
III – 7 – Paraclinical examinations
is relatively complex and optional: it should not restrict the use of the questionnaire. This section has 5 parts: blood investigations, neuro-imaging techniques, electroencephalography, serologies and microbiology.
III – 8 – Etiology
This section searches the cause of the epilepsy and classify the seizure disorder in :
III – 9 – Treatment
Classical or traditional medical treatment used by the patient is recorded. An evaluation of the efficacy of the treatment is carried out.