African Journal of Neurological Sciences, Vol. 21, No. 1, 2002, pp. 4-14
QUESTIONNAIRE FOR INVESTIGATION OF EPILEPSY IN TROPICAL COUNTRIES
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:.
II - 1 - Screening
(appendix 1): using the sections
“ Demographic data, Screening, Epilepsy confirmation ”.
This could help to estimate the prevalence in an area if the sampling is suitable
for this..
II - 2 - Clinical forms of epilepsy
(appendix 2): using the sections
“ Demographic data, Screening, Epilepsy confirmation, Natural history
of the seizure disorder ”..
II - 3 - Etiology (appendix
3):
using the sections “ Demographic data, Screening, Epilepsy confirmation,
Natural history of the seizure disorder, Past medical history, Clinical examination,
Paraclinical investigations, Etiology..
II - 4 - Treatment (appendix
4):
using the sections “ Demographic data, Screening, Epilepsy confirmation,
Natural history of the seizure disorder, Treatment ”..
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..
The code of each individual is at the top of each page. The first 3 spaces
are meant for the code of the country. To keep the study homogeneous, the codes
could be given to the main investigator of the particular study, by the Institute
of Tropical Neurology of Limoges; the next 2 spaces are meant for the year of
the study, the 2 following spaces for the region and the last 4 spaces for the
identification of each subject. Through this system, various studies can be
carried out in the same country or in different countries (up to 9999 subjects),
and remain confidential as the indentification section can be separated from
other sections..
For example, the code of the first subject of a study carried out in 1996
in the Atacora region in Benin could be BEN-96-AT-0001..
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..
The data storage system used follows the ethical requirements of confidentiality
and is quite safe. The questions concerning ethnic groups and religion are not
compulsory..
III - 2 - Screening.
This can be filled by a non medical investigator. However, it is important
that all field-investigators should be motivated 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
on-going 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 annex..
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. .
The siblings are defined as brothers and sisters of the same mother to the
subject. The consanguinity relations and past family histories should strictly
be looked for in the same family..
A pregnancy should be considered abnormal if the mother had haemorrhages,
hypertensive crises, premature uterine contractions, threatened abortion. Labour
should be considered as prolonged of its goes beyond 12 hours for a primigravida
and 6 hours for a multigravida..
An infant is considered as premature in this questionnaire if the mother gave
birth before the 35th week of amenorrhea. The psychomotor development
should be appreciated against the age of acquiring different milestones e.g.
sitting, walking, language etc..
Measles is considered as severe if the subject developed neurological or pulmonary
complications. Encephalitis is diagnosed if these is pertubations of conciousness,
local neurological signs and fever. Encephalopathy presents with pertubations
of conciousness and neurological problems. Meningitis is characterized by a
meningeal syndrome associated with fever. Coma beyond 24 hours is considered
prolonged..
For the questions P47 to P49, one needs to find out if the subject works with
animals, professionally or in his daily life, or if the animals live in his
house. Excessive alcohol consumption is defined as daily ingestion of 300 ml
or more of pure alcohol in females and 400 ml or more in males. All persons
who use illegal intoxicants, natural or synthetic chemicals that may cause physical
and / or psychological dependency are considered as drug addicts..
III - 6 - Clinical examination.
The general state of health of the subject must be appreciated
by investigator and is defined as: poor if there exist a loss of weight with
asthenia, and difficulties in daily activities, average if there exist asthenia
or loss of weight but no problem in daily activities, good if there exist no
weight loss and no asthenia..
Intelligence Quotient is used to judge mental retardation of subjects. The
following is the exact definition; mild mental retardation when the IQ is between
70 and 90, moderate mental retardation when IQ is between 50 and 70 and severe
mental retardation when IQ is below 50. The IQ system is not however indispensable
and the doctor should do a global evaluation of retardation..
III - 7 - Paraclinical examinations.
This 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.
All paraclinical examinations that are possible to do, should be coded as they
may shed more light on the search of the etiology..
III - 8 - Etiology.
This section searches the cause of the epilepsy and classify the seizure
disorder in:.
Orthodox or traditional medical treatment used by the patient is recorded.
An evaluation of the efficacy of the treatment is made.
