Epilepsia, 43(6):652–658, 2002
Blackwell Publishing, Inc.
© International League Against Epilepsy
An Epilepsy Questionnaire Study of Knowledge and Attitudes in
Canadian College Students
G. Bryan Young, Paul Derry, Ingrid Hutchinson, Verity John, Suzan Matijevic, Lisa Parrent, and
Samuel Wiebe
The Epilepsy Unit, London Health Sciences Centre, Fanshawe College, and the University of Western Ontario,
London, Ontario, Canada
Summary: Purpose: Controversy exists about the relation of
societal knowledge and attitudes regarding epilepsy. We con-
ducted a survey to examine knowledge and attitudes, to note
gender and occupational influences, and to examine the effect
of an informational brochure.
Methods: We administered a standardized questionnaire that
noted demographics and examined knowledge and attitudes
regarding epilepsy and persons with epilepsy, respectively, to a
wide variety of Canadian college students. In a separate class
we gave every other student a brochure regarding epilepsy and
then administered the questionnaire to both the naïve and
brochure-exposed students.
Results: Knowledge was patchy and weakest for the approxi-
mate prevalence of epilepsy in the population, hereditary epi-
lepsy and several other etiologies, recognition of nonconvulsive
Prejudice has been defined as “being down on some-
thing you are not up on” (1). It follows that public atti-
tudes toward persons with epilepsy should reflect the
population’s understanding about the disorder (2,3).
Originally epilepsy was considered to represent demonic
possession. Although medical science has shown that
epilepsy arises from a transient dysfunction in the brain,
fear and ignorance still lead to discrimination and feel-
ings of shame (4). In addition, epilepsy in the public
mind and even in the laws of some countries has been
strongly associated with mental illness and cognitive dis-
abilities, unfortunate generalizations that unfairly affect
many individuals with epilepsy (5–7). Such pervasive
social stereotyping is difficult to overcome (8–10).
We surveyed knowledge and attitudes among a group
of young Canadian college students, as they represent the
generation about to enter the workforce in a broad range
of vocations. This population provided a high degree of
Accepted February 23, 2002.
Address correspondence and reprint requests to Dr. G.B. Young at
London Health Sciences Centre, Room 10-L8, 339 Windermere Road,
London, Ontario, Canada N6A 5A5. E-mail: bryan.young@lhsc.on.ca
652
seizures as a type of epilepsy, and knowledge of antiepileptic
drug–induced teratogenicity. In contrast, attitudes were more
uniformly favorable. However, 11 and 14%, respectively,
showed negative bias against persons with epilepsy having
children and equal opportunity for occupational employment.
Women were slightly but significantly more tolerant than men.
The brochure-exposed group showed better knowledge but
equivalent attitudes compared with the naïve group.
Conclusions: Results compare favorably with surveys in
other countries. Although knowledge was patchy, it could be
easily improved on with an educational brochure. Attitudes
were positive but show some discrepancies from knowledge
and a gender effect. Key Words: Epilepsy—Questionnaire—
Survey—Knowledge—Attitudes.
compliance, with an opportunity to compare various
groups over time. The project also afforded the oppor-
tunity to assess an educational brochure on epilepsy for
its effect on knowledge and attitudes.
METHODS
We used a standardized questionnaire composed of
three sections: demographics (questions 1–7), knowledge
of epilepsy (questions 8–11), and attitudes toward per-
sons with epilepsy (questions 12–16) (Table 1). The sec-
tions and questions were taken from those used in other
published surveys (11–15).
The questionnaires were applied to students in Fan-
shawe College in London, Ontario, Canada. In the first
year (Study 1), the questionnaire was administered to a
psychology class (n ⳱ 55) during class hours. In Study
2, conducted the following year, the questionnaire was
given immediately after class to a broad group of stu-
dents (n ⳱ 136), ranging from those in social programs
to those in mechanics and technical disciplines. In Study
3, performed the next year, the questionnaire was given
to a single large class (n ⳱ 59) that was divided into two
 CANADIAN EPILEPSY QUESTIONNAIRE SURVEY 653

TABLE 1. Epilepsy questionnaire

1. Your sex: [ ] male [ ] female
2. Your age (years):
3. Program (and number) at Fanshawe College:
4. Have you ever heard or read about epilepsy? [ ] yes [ ] no
5. Have you ever had more than one seizure after the age of 5 years? [ ] yes [ ] no
6. Do you know or have you every known anyone who had epilepsy? [ ] yes [ ] no
7. Have you ever seen anyone having an epileptic seizure? [ ] yes [ ] no
8. Epilepsy occurs in (pick . . .
[ ] one in every 1,000 people
[ ] one in every 100 peoplea
[ ] one in every 10,000 people
[ ] one in every 50,000 people
[ ] one in every 1,000,000 people
9. What do you think causes epilepsy? (Check all that you think apply)
[ ] accidentsa
[ ] inherited diseasea
[ ] insanity or other mental illness
[ ] brain tumorsa
[ ] birth defectsa
[ ] strokea
[ ] don’t know
10. What do you think an epileptic attack is? (Pick any that you think apply.)
[ ] a convulsion or shakinga
[ ] a loss of consciousnessa
[ ] an episode of behavioral changea
[ ] a period of memory disturbancea
[ ] don’t know
11. What do you think about drug therapy for epilepsy? (Check all that apply)
[ ] it is seldom effective in controlling seizures
[ ] it is best given as two or more drugs that work together
[ ] it has advanced significantly over the past 10 yearsa
[ ] it occasionally produces malformations in babies of mothers with epilepsya
[ ] it can be stopped abruptly after seizures are controlled for a year.
[ ] don’t know
12. Would you object to having any of your (eventual) children associate with persons who
sometimes had epileptic seizures in school or in a playground? [ ] yes [ ] noa
13. Would you object to a person with epilepsy marrying a close relative of yours (brothers, sister,
or child)? [ ] yes [ ] no
14. Do you think persons with epilepsy should have children? [ ] yes [ ] no
15. Do you think that, in general, persons with epilepsy should be employed at the same jobs as
other people? [ ] yesa [ ] no
16. Comments regarding epilepsy or persons with epilepsy (optional):

a
Indicate correct or positive (tolerant) responses.

groups, such that every other student (based on seating)
was given a comprehensive lay brochure (n ⳱ 33), All
about Epilepsy (16), and the others were not (n ⳱ 26).
The booklet is a standard lay brochure that was patterned
after similar comprehensive brochures produced by the
Epilepsy Foundation of America. A 15-min period was
allowed those students who received the brochure to
study the document. The questionnaire was then given to
both groups. No talking between students was allowed
during the study or questionnaire-completion phases by
the supervising professor.
We obtained the mean number of correct/positive re-
sponses for knowledge and attitudes. This was assessed
in 191 patients not exposed to the educational brochure
(the 136 patients from Study 2 and the 55 from Study 1),
as there were no significant differences in responses be-
tween these two studies. With linear regression we ex-
amined the strength of the relation between predictor
variables such as gender, age, training program, having
read about epilepsy, knowing someone with epilepsy,
having witnessed a seizure, having had more than one
seizure after age 5 years, and the two dependent vari-
ables, attitudes and knowledge. The proportion of cor-
rect/favorable responses in students exposed and not
exposed to the educational brochure was compared by
using the ␹2 test. The mean number of correct/positive
responses in each group was compared with an indepen-
dent t test. We used a 5% level of statistical significance
for all tests.
RESULTS
For both studies, all students in the classes surveyed
agreed to participate, and compliance was 100% in com-
pleting and returning the questionnaire.

Epilepsia, Vol. 43, No. 6, 2002

654 G. B. YOUNG ET AL.

FIG. 1. Profile of students. Q numbers re-

fer to question numbers in Table 1. Values
on the horizontal axis represent percent-
ages of positive responses.

There was no significant difference between Study 1
[mean correct answers for knowledge items, 4.6 (SD,
2.81) and mean positive answers for attitude questions,
3.5 (SD, 0.81)] and Study 2 [mean correct answers for
knowledge items, 4.2 (SD, 2.72) and mean positive an-
swers for attitude questions, 3.6 (SD, 0.71)], so their
results were combined. In the combined first and second
studies, 91 men and 100 women participated. The mean
age was 22 years [median, 20 and (SD) 5.4 years). One
hundred eleven students were in science or technology
programs, and 80 were enrolled in humanities programs.
Figure 1 shows further demographic features. This initial
survey revealed that 91% of students had heard or read
about epilepsy; only about half answered positively to
having personal experience with someone with epilepsy.
Knowledge was patchy (Table 2): most did not know the
approximate prevalence of epilepsy in the population,
only about half answered that epilepsy could be inher-
ited; most did not know that epilepsy could be caused by
brain tumors, birth defects, or stroke. However, 90%
differentiated epilepsy from mental illness. Although
87% identified an epileptic attack with convulsive move-
ments, most did not realize it could be manifest as an
alteration of behavior or a memory disturbance. Most
were not aware of significant advances in antiepileptic
drug (AED) therapy over the past decade. Surprisingly,
>90% did not know that AEDs could cause fetal malfor-
mations. Regression analyses among those not exposed
to the educational brochure showed that the best predic-
tor of good knowledge of epilepsy was knowing some-
one who had epilepsy (p < 0.01). The mean number of
correct items was 5 (SD, 2.9) in this group, as compared
with 3.5 (SD, 2.4) in those who did not know someone
with epilepsy (between-group difference, p < 0.001).
Attitudes, on the other hand, were positive (Table 3).
More than 80% of students answered each of the attitude

TABLE 2. Knowledge base

Question (no. from Table 1) Number correct (%) Number incorrect (%)
Epilepsy occurs in 1/100 (Q8) 53 (28%) 135 (72%)
Causes of epilepsy (Q9)
Accidents 48 (25%) 141 (75%)
Inherited disease 104 (55%) 85 (45%)
Insanity or other mental illness 172 (91%) 17 (9%)
Brain tumors 58 (31%) 131 (69%)
Birth defects 61 (33%) 128 (68%)
Stroke 49 (26%) 140 (74%)
Don’t know 122 (65%)–(did know) 67 (35%) (didn’t know)
An epileptic attack is (Q10)
A convulsion or shaking 167 (87%) 24 (13%)
A loss of consciousness 94 (49%) 97 (51%)
An episode of behavioral change 54 (28%) 137 (72%)
A period of memory disturbance 56 (29%) 135 (71%)
Don’t know 174 (91%) checked did know 17 (9%) checked did not know
Drug therapy for epilepsy (Q11)
Is seldom effective 173 (91%) 16 (8%)
Is best given as 2 or more drugs 172 (90%) 17 (9%)
Has advanced over past 5 years 67 (35%) 122 (64%)
Occasionally produces malformations in babies 14 (7%) 174 (91%)
Can be stopped abruptly after 1 year of control 175 (92%) 14 (7%)
Don’t know 79 (41%) 110 (58%)
Overall knowledge of epilepsy (mean, SD) 4.3 questions (2.7) 8 questions (2.5)

Epilepsia, Vol. 43, No. 6, 2002

 CANADIAN EPILEPSY QUESTIONNAIRE SURVEY 655

TABLE 3. Attitudes TABLE 4. Demographics of comparison groups

Positive Negative Naı̈ve
Question (no. from Table 1) attitude (%) attitude (%) Brochure-exposed students
Item students (n ⳱ 33) (n ⳱ 26)
Object to (eventual) children
associating with persons with Age in years (mean, median, SD) 21.6, 20, 4.8 20, 20, 1.8
epilepsy (Q12) 181 (95%) 9 (5%) Female: number (per cent) 19 (58%) 16 (62%)
Object to relative marryng someone Male number (per cent) 14 (42%) 10 (38%)
with epilepsy (Q13) 182 (95%) 8 (4%) Science/technology 18 (55%) 21 (81%)
Should persons with epilepsy have Humanities 15 (45%) 5 (19%)
children (Q14)? 161 (84%) 21 (11%) Heard or read about epilepsy
Should persons with epilepsy be (per cent) (Q4) 33 (100%) 26 (100%)
employed at same jobs as other Had >1 seizure after 5 years
people (Q15)? 160 (84%) 27 (14%) (percent) (Q5) 0 (%) 0 (0%)
Overall attitudes toward epilepsy Know someone with epilepsy
(Mean, SD, %) 3.6, 0.7, 90% 0.3, 0.7, 8% (percent) (Q6) 19 (58%) 14 (54%)
Witnessed an epileptic
seizure 16 (49%) 9 (35%)

items favorably. It is of interest that 95% would not

object to a person with epilepsy marrying a close rela-
tive, yet 11% thought that persons with epilepsy should
not have children, and 14% thought should not be em-
ployed at the same jobs as other people. Regression
analyses showed that on average, women were more tol-
erant than men: the mean number of positively answered
items for questions 12–15 for women and men was 3.8
(SD, 0.55) and 3.4 (SD, 0.87), respectively (p < 0.01).
Forty-three percent of women answered all attitude items
positively compared with 37% of the men, and 2% of
women had more than one unfavorable attitude, com-
pared with 5% of men.
Table 4 shows the demographics and Figs. 2–5 show
the comparison of those students who were exposed to
the brochure compared with those who were not (naïve
group) in Study 3. The naïve group proved to be virtually
identical to the group studied 2 years earlier (no signifi-
cant difference between scores on any questions or sub-
category questions). The brochure-exposed and naïve
groups were comparable in age, sex, programs, and life
experiences relative to epilepsy. The brochure-exposed
group performed significantly better than the naïve group
in overall score (p < 0.001) and in a number of items:
prevalence of epilepsy (Question 8): 20 or 63% of the
brochure-exposed group, whereas only 6 of 26 or 23%
answered correctly (p < 0.01), causes (accidents, tumor,
and stroke; p < 0.05) and in knowing that AED therapy
has advanced significantly over the past 10 years (p <
0.01). There were no significant differences between
groups in knowing that insanity did not cause epilepsy, in
knowledge of ictal manifestations and the other exam-
ined aspects of AED therapy. There were no differences
between brochure-exposed and naïve groups in attitudes,
which were positive in >82–100% of individual issues
(Fig. 5, related to Questions 12–16 in Table 1).
In neither the first, second (observational), nor com-
parative studies were there statistically significant differ-
ences between students in the humanities programs and
those in the motive program with respect to knowledge
and attitude.
DISCUSSION
Our cross-sectional surveys of knowledge and atti-
tudes in young adult Canadian college students achieved

FIG. 2. Knowledge of causes of epilepsy:

question 9. *p < 0.05. ‡p < 0.001.

Epilepsia, Vol. 43, No. 6, 2002

656 G. B. YOUNG ET AL.

FIG. 3. Knowledge: question 10.

FIG. 4. Drug therapy for epilepsy. †p <

0.01.

FIG. 5. Attitudes. Q numbers refer to

question numbers in Table 1.

Epilepsia, Vol. 43, No. 6, 2002

 CANADIAN EPILEPSY QUESTIONNAIRE SURVEY 657

TABLE 5. Comparison of countries

Persent American Chinese Danish Finnish Italian Taiwanese United Arab
study study study study study study study Emirates study West German
Question from Table 1 1998–2000 1985 1995 1992 1980 1985 1995 1998 study 1985

Heard or read about epilepsy (Q4) 91% 95% 93% 97% 95% 73% 87% 75% 90%
Knew someone with epilepsy (Q6) 57% 63% 77% 64% 49% 61% 70% —
Witnessed an epileptic seizure (Q7) 48% 63% 72% 64% 45% 52% 56% 34% —
Cause (Q9)
Birth defect 32% 6% 25% 27% — 10 14% — —
Mental illness 9% 2% 17% <1% — — 8% 16% 11%
Hereditary 54% 9% 17% 37% — 11 28% 16% —
Trauma 25% — — 18% — 10 — 12% —
Tumor 30% — — — — — — — —
Stroke 26% — — — — — —
What is a seizure (Q10)
Convulsion 87% 61% 61% —
Loss of consciousness 49% 52% 52% —
Behavioural change 28% 19% 19% —
Memory disturbance 29% 10% 10% —
Don’t know 9% 13% 13% —
Attitudes 77%
Children associating (Q12) 95% 89% 43% 91% — 58% 93% —
Marrying close reltive (Q13) 95% 68% 13% — — — 28% —
Persons with epilepsy having children (Q14) 84% — — — — — —
Equal employment (Q15) 84% 79% 47% 89% — 51% 69% 90% 80%

Studies: Chinese and Taiwan: M-Y Chung et al., 1995; Italy, West Germany, and USA: Canger and Cornaggia, 1985; U.S.A.: Caveness and Gallup, 1980; Finland:
Iivanainen et al., 1980; Denmark: Jensen and Dam, 1992; Australia: Vinson, 1975.

100% compliance and were consistent from year to year.
These features suggest that the results should be reason-
ably valid and representative of this population. It was
gratifying that attitudes were favorable or positive in
84% in all categories. The lowest scores were for atti-
tudes regarding employment; this may not necessarily
reflect attitudes of workplace discrimination, but may
have been influenced by concerns about safety or abili-
ties. However, a similar survey in Hungary showed a
similar discrepancy between attitudes toward employ-
ment versus other aspects of tolerance (17). Further
analysis will likely reveal employment to be an area of
public concern that may require additional educational
programs and special legislation (17,18). Employment is
one of the greatest problems facing persons with epilepsy
(19,20). Unemployment compounds the social problems,
including negative self-image and attitudes, of those with
epilepsy (21). The difference in attitudes between men
and women is small but significant. It is unclear whether
this difference is biologic or cultural in nature; further
studies could be conducted to address this issue.
Knowledge about epilepsy was patchy and showed
lack of acquaintance with prevalence, seizure causation,
ictal manifestations, and the teratogenicity of AEDs.
There may be some dissociation of knowledge and atti-
tudes, although the correct responses indicate a modicum
of knowledge about epilepsy and indicate the students
were enlightened to the fact that epilepsy is not equiva-
lent to and does not arise from mental illness. A study
from Brazil showed a dissociation between knowledge
and attitudes in the reverse direction: medical students,
who showed a good knowledge of epilepsy, were as
likely as persons from lower socioeconomic groups to
have a negative attitude toward their relatives marrying
someone with epilepsy (22). A study from Kentucky re-
vealed that the greatest bias against persons with epi-
lepsy on the Relative Quality of Life measure was among
the most educated urban population, compared with rural
and Appalachian residents (23).
Our study differed from other studies in examining the
effect of an educational brochure. Although information
in the brochure covered the knowledge-based items,
there was improvement only on questions of prevalence,
causes, and realization that AED therapy has improved
over the last decade. Many items were not improved on,
including the important concept of AED-induced terato-
genicity. Attitudes were not different between the
brochure-exposed and naïve groups; this likely relates to
the extremely high scores in this category, a “ceiling
effect.” The possible ambiguity of the issue of employ-
ment might be clarified by additions to the brochure.
Results of our study compare favorably with those of
earlier studies of other countries (Table 5). There is still
room for improvement in knowledge, and a more com-
prehensive understanding may be reflected later in fur-
ther improvement in attitudes. This could be explored.
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