Epilepsiu, 41(1):98-104, 1999
Lippincott Williams & Wilkins, Inc., Philadelphia
0 Intcmational League Against Epilepsy
Clinical Research
The Stigma of Epilepsy: A European Perspective
Gus A. Baker, Jayne Brooks, *Debbie Buck, and *Ann Jacoby
University Department of Neurosciences, Walton Centre for Neurology and Neurosurgery, Lower Lane, Fazakerley Liverpool;
and “Centre for Health Services Research, University of Newcastle Upon Tyne, Newcastle Upon Tyne, England
Summary: Purpose: To study the stigma of epilepsy in a Eu-
ropean sample.
Methods: Clinical and demographic details and information
about patient-perceived stigma was collected by using self-
completed questionnaires mailed to members of epilepsy sup-
port groups.
Results: Stigma data were collected from >5,000 patients
living in 15 countries in Europe. Fifty-one percent reported
feeling stigmatised, with 18% reporting feeling highly stigma-
tised. High scores were correlated with worry, negative feelings
about life, long-term health problems, injuries, and reported
side effects of antiepileptic drugs (AEDs). Cross-cultural com-
The psychosocial impact of epilepsy has been well
documented, and people with epilepsy report the signifi-
cant impact of this condition and its management, in
terms of family dysfunctioning (l), poor self-esteem (2-
4), and reduced employment opportunities (5); with in-
creased levels of anxiety (1,6,7-lo), and depression
(6,9,11-13). A central feature of the condition is its stig-
matising nature. Epilepsy has been called a “stigmatising
condition par excellence” (14), and people with epilepsy
report feelings of stigma and/or discrimination based
solely on their label of epilepsy. The “burden of the
diagnosis” may also have significant consequences in the
way individuals appraise or reappraise themselves and
the world (1 5 ) ; consequently some individuals will see
themselves as defined by their diagnosis. Others will
reject the label of epilepsy or try to renegotiate another
one (16).
A number of studies have addressed the stigmatising
nature of epilepsy and its associated psychological dis-
tress (1,2,14,17-19). The concept of stigma has been
described as “an attribute that is deeply discrediting”
Accepted June 17, 1999.
Address correspondence and reprint requests to Dr. G. A. Baker at
University Department of Neurosciences, Walton Centre for Neurology
and Neurosurgeiy, Lower Lane, F a d e r l e y Liverpool L9 7LJ, U.K.
98
parisons revealed significant differences between countries. A
multivariate analysis identified impact of epilepsy, age of on-
set, country of origin, feelings about life, and injuries associ-
ated with epilepsy as significant contributors on scores on the
stigma scale.
Conclusions: This study confirms the findings of previous
studies that have identified the importance of both clinical and
nonclinical factors in understanding the stigma of epilepsy. The
results of cross-cultural differences require further explanation,
and much more research should be conducted to reduce the
stigma associated with epilepsy. Key Words: Epilepsy-
Quality of life-European-Stigma-Psychosocial.
(20), and one that has the potential to lead to psychopa-
thology in people with epilepsy (21). Schneider and Con-
rad (22), however, found diametrically opposed view$
amongst their interviewees; some saw themselves as ex-
periencing enormous problems as a consequence of hav-
ing epilepsy in their daily lives; others saw it as “no big
thing.”
Recent studies have reported that people with seizures
that are well controlled or in remission are less likely to
express feelings of stigma if they have been seizure free
for 6 months (23) or 2 2 years (10,24,25). However,
Baker et al. (14) reported that even patients with infre-
quent seizures had higher scores on the stigma scale in
comparison with seizure-free patients.
Evidence suggests that higher levels of perceived
stigma correlate with anxiety (19,26), depression (6, lo),
and low self-esteem (3,27). In addition, Hermann et al.
(28) found seven variables that correlated significantly
with scores on the General Health Questionnaire (29),
including perceived stigma and poor adjustment to epi-
lepsy. Furthermore, Buck et al. (30) found a significant
relation between compliance with medication and feel-
ings of stigmatisation, indicating the potential impor-
tance of the study of stigma in the management of the
condition.
 THE STIGMA OF EPILEPSY 99

Understanding the relative contributions of factors in-
fluential in the development and maintenance of feelings
of stigma and their cross-cultural comparison is impor-
tant to broaden the available knowledge base regarding
these factors. This study was therefore undertaken with
the aims of (a) determination of factors influential in the
development and maintenance of feelings of stigma, (b)
examination and comparison of cross-cultural levels of
stigma, and (c) consideration of potentially influential
factors in the reduction of stigma.
METHODS
The study was conducted in 15 countries in Europe
and aimed to recruit between 4,000 and 5,000 adults
aged 16 years and older. The sampling frame for the
study was the epilepsy support groups or, in countries
where these did not exist, neurology outpatient clinics. In
the four major contributing countries (France, United
Kingdom, Germany, and the Netherlands), data were
collected through epilepsy support groups. A self-
completion questionnaire addressing a number of qual-
ity-of-life issues was developed in English and then
translated. To ensure the accuracy of the translated ver-
sions of the questionnaire, back-translations from each
language were checked by the investigators, and amend-
ments made where necessary. A generic health-status
measure included in the questionnaire (Short-Form
Health Survey: SF-36) was already available in transla-
tion for some countries covered by the study. Where this
was the case, that version was used; where it was not, the
U.K. version was translated and back-translated.
Chief administrators in the various support groups
were approached by letter requesting their cooperation
with the study, outlining the proposed study design, and
defining eligibility criteria for potential respondents
(adults aged 216 years, with epilepsy, and without
known learning disability). A covering letter was dis-
patched with each questionnaire, under the letterheads of
the individual support groups. For practical and logistic
reasons, and to ensure the confidentiality of respondents,
it was decided not to send any reminders.
Questionnaire domains
The questionnaire contained a number of scales and
questions (see Table 1) covering various aspects of living
with epilepsy and have been reported elsewhere (14).
The stigma scale is detailed in full in Appendix A.
Statistical methods
Data were analysed with the SPSSx statistical package
for social sciences (31), on the University of Newcastle
network. The x2 test of association was used for each
domain in the questionnaire. The relative contributions
of the various clinical and demographic variables to per-
ceived stigma were further investigated by a stepwise
multiple regression analysis (MRA). This method was
selected as the independent variables were added to the
equation one at a time, the order of entry being deter-
mined by statistical considerations. Because of the very
large sample size, only differences significant at 5 1%
level were reported.
Response to the study
In all, 5,506 questionnaires were returned, of which
295 were rejected as unusable, most often because they
had been completed by people younger than 16 years.

TABLE 1. Measures used in the questionnaire

Domain
Seizure type and frequency
Injuries associated with seizures
Antiepileptic drug side effects
Compliance with medication
Perceived impact of epilepsy
Feelings of stigma
Extent of worry over epilepsy
Health status
Perceived quality of life overall
Measure Items Reference
Number of epileptic attacks in the past year (none, less than one per 6
month, one or more per month). Types of attack (only major, both
major & other, only other).
Includes burn or scald, head injury, dental injury, and any other injury 4 Buck et al. (31)
(yes or no)
Includes unsteadiness, tiredness, restlessness, feelings of aggression, 21 Baker et al. (40)
shaky hands, sleepiness, depression, etc. (never a problem, rarely a
problem, sometimes a problem, always or often a problem)
How regularly tablets are taken (never miss, miss <once a month, miss 4
>once a month but <once a week, miss the tablets once a week or
more)
Does epilepsy and its treatment affect relationships with spouse, partner, 8 Jacoby et al. (38)
other close family member or friends, social life, work, health,
feelings about self, plans and ambitions for the future (a lot, some, a
little, not at all)
Because of my epilepsy: I feel . . . some people are uncomfortable with 3 Jacoby (1 9)
me, some people treat me like an inferior person, some people would
prefer to avoid me (yes or no)
How much worry or concern is felt about epilepsy? (a lot, some, a little, 4 Jacoby et al. (10)
not at all)
SF36: A measure of eight health concepts including physical and social 36 Ware & Sherbourne (39)
functioning, pain, and general health
Terrible-Delighted Faces scale: A measure of the individual’s I Andrews & Withey (40)
perceptions of QOL

Epilepsia, Vul. 41, Nu. I , 1999

100 G. A. BAKER ET AL.

The remainder were excluded because >lo% of the ques- TABLE 2. Clinical and demographic characteristics
tionnaire was left blank by the respondent. This analysis of responders
was therefore based on 5,211 respondents. The majority European Community
of respondents (69%) were drawn from four countries: Parameter study study
France (12%), Germany (15%), The Netherlands (15%), Age (yrY 35 (27,46) 46 (31,62)
and the United Kingdom (27%). The other participating Age of onset (yr)” 14 (8,23) 22 ( 14,44)
countries each contributed <lo% of respondents. Most of Duration of epilepsy (yr)“ 16 (7, 26) 9 (3, 18)
Seizure type (%)
the support groups in the participating countries did not Tonic-clonic only 29 34
keep accurate records of the numbers of questionnaires Tonic-clonic and others 39 18
mailed out. Therefore we were unable to calculate an Others only 32 48
Seizure frequency last year (%)
overall response rate for the study. However, the re- Seizure free 38 50
sponse rate in the United Kingdom was 46%, and that in <1 seizure per month 24 25
the Netherlands was 57%, an acceptable level for postal >1 seizure per month 38 25
Time since last seizure (yr)” 0 1 (0,5)
surveys without reminders (6). Further information about Marital status (%)
the individual response rate for each country was re- Marriedcohabiting 48 58
ported previously (14). Single 45 26
Separated/divorced 5 8
RESULTS Widowed 2 8
Employment status (%)
Demographic and clinical characteristics In employment (full timdpart time) 46 35
Unemployed 11 10
of respondents Retired 9 20
The median age of the study population was 35 years, Registered unemployable 11 15
and 49% of respondents were men. Forty-five percent Injuries
Head injury 297 -
were single, 48% were married or cohabiting, 5% were 302 -
Burnkald
separated or divorced, and 2% were widowed. Forty-six Dental injury 290 __
percent were in paid employment either full time or part Other fracture 278 -
Seizures while bathinglswimming 313 -
time, 11% were unemployed, 9% were retired, and a
Stigma (%)
further 11% were registered unemployable. The median No stigma (0) 49 62
age of onset was 14 years, and the mean duration was 16 Severe stigma (3) 18 12
years. Twenty-nine percent of respondents reported gen- Median (25th and 75th percentiles).
eralised seizures only, with 39% reporting both partial
and secondarily generalised seizures. Thirty-eight per- items, indicating that they felt highly stigmatised by it.
cent had been seizure free, with 24% having fewer than Respondents were more likely to feel stigmatised by epi-
one seizure per month, and the remaining 30% reported lepsy if they had a combination of seizure types (x2 =
having one or more seizures per month. Twenty-nine 124.49, df = 2; p < 0.0001) or frequent seizures (x2 =
percent reported long-term health problems in addition to 352.19, df = 2 , p < 0.0001; see Table 3).
the epilepsy. A significant number of patients reported High scores on the stigma scale were correlated with
injuries directly associated with epilepsy including head worry (x2 = 413.92, df = 3, p < 0.00001); negative
injuries, burns, dental injuries, other fractures, and sei- feelings about life (x2 = 374.39, df = 6, p < 0.00001;
zures while bathing (see Table 2). These results have see Fig. 1); other long-term health problems (x2 =
been reported in much more detail elsewhere (31). A 45.12, df = 1, p < 0.00001); low scores on the SF-36 (x2
comparison of the clinical and demographic characteris- = 240.43, df = 4, p < O.OOOOl), injuries incurred as a
tics of this sample with those of an unselected sample result of epilepsy (x2 = 367.47, df = 1, p < 0.00001)
from a recent community study of epilepsy in the United and higher levels of reported side effects (x2 = 158.56,
Kingdom has been reported previously (14) and is in- df = 1, p < 0.00001).
cluded in Table 2. The respondents from the European
study had a lower median age and age of onset than did Cross-cultural differences in levels of
those respondents from the unselected community reported stigma
sample. They also reported a longer median duration of A comparison of the stigma scores by country is pre-
epilepsy, and a greater proportion of subjects in this Eu- sented in Fig. 2. Respondents from France were more
ropean study were experiencing tonic-clonic seizures likely to report scores on the stigma scale than from
and multiple seizure types. Poland or Spain.
Perceived stigma of epilepsy for the Contribution of clinical and nonclinical variables to
whole population scores on the stigma scale
Fifty-one percent of the study population reported In a multivariate analysis of clinical (seizure fre-
feelings of stigma, with 18% answering “yes” to all three quency, seizure type, age of onset, duration of epilepsy,

Epilepsia, Vol. 41, No. 1, 1999

 THE STIGMA OF EPILEPSY 101

TABLE 3. Reported stigma by seizure type and frequency

Score on stigma scale
0 1 2 3
(n = 2,418) (n = 1,027) (n =616) (n = 920)
Seizure type
Tonic-clonic only (%) 56 21 9 14
Tonic-clonic + others (%) 39 22 16 23
Others only (%) 54 19 10 17
Seizure frequency (n = 2,508) (n = 1,054) (n = 629) (n = 939)
None in last year (%) 63 19 8 10
Less than one per month (%) 52 22 11 15
One or more per month (%) 33 21 17 29
All respondents (%) 49 21 12 18

Figures in brackets are numbers on which percentages were calculated.

side effects, injuries, long-term health problems, compli-
ance) and nonclinical variables (age, gender, marital sta-
tus, feelings about life as a whole, worry about epilepsy,
employment status, perceived general health, perceived
impact of epilepsy, and country of origin), perceived
impact of epilepsy was the most significant factor in
determining scores on the stigma scale in this population.
Other variables implicated include age of onset, country
of origin (Spain, Netherlands, Sweden, or France), feel-
ings about life, and injuries. Seizure frequency and sei-
zure type and the side effects of medication contributed
significantly less to the overall variance (see Table 4).
Cross-cultural differences on the stigma scores were
examined by conducting multiple regression analyses for
each of the following countries: United Kingdom, Neth-
erlands, Germany, France, Spain, Sweden, Italy, and
Switzerland. Given that the Impact of epilepsy accounted
for a significant amount of variance for the overall popu-
lation and was significantly correlated with scores on the
stigma scale, multiple regression analysis was conducted
by using the previous model but excluding impact scores.
How much respondents worried about their epilepsy and
how respondents feel about their life as a whole were
significant predictors for scores on the stigma scale for
four of the seven countries, whereas age of onset and
injury were significant predictor for three of the seven
countries examined. Seizure frequency and seizure type
were not significant predictors of scores on the stigma
scale for any of the countries (see Table 5).
DISCUSSION
The main focus of this study has been an exploration
of the cross-cultural factors likely to be influential in the
stigma of epilepsy. We accept that one major methodo-
logic criticism of this study is biased sampling. Previous
study populations have suffered from the criticism of
bias as they have been taken from hospitals and epilepsy
support groups (3,17). This study is no exception; 69%
of recruited respondents were members of epilepsy sup-
port groups across Europe, and the results, therefore,
may be biased toward the opinions of people who find
living with epilepsy the most difficult. As mentioned
previously, however, in comparing this sample with an
unselected U.K. community sample, the clinical and de-
mographic characteristics were similar, although the Eu-
ropean sample had an earlier age of onset of epilepsy and
a longer duration. They were also more likely to report

-u)
C

P
P

FIG. 1. Feelings of stigma in relation to feel- c

E
ings about life as a whole. *Respondents who 2p
scored either 1 , 2, or 3 on the stigma scale.

5
Feelings about life a s a whole
IFLlstigmatised 1 *

Epilepiu, Vol. 41, No. I , 1999

102 G. A. BAKER ET AL.

70
66
60
55
$50
$6
C40
$35
2g
u-
FIG. 2. Cross-cultural differences between re-
220 spondents' reported feelings of stigma. *Respon-
15
10 dents who scored either 1, 2, or 3 on the stigma
5 scale.
0

higher levels of stigmatisation, although the differences French respondents were "more likely to report lower
could not be considered to be substantial (14). We there- scores on psychological well-being, feelings about
fore believe that much of this data can be generalised to health, and satisfaction with sexual relationships."
people with epilepsy, although we recognise that the re- A number of possible hypotheses could explain these
sults should be interpreted with some caution. cultural differences, including sociocultural bias against
Results from a correlational analysis for the whole epilepsy, the organisation of the national health system
population indicated that the most important factors as- within each country, existence of high-profile public fig-
sociated with stigma were impact, age at onset, worry ures (role models) with epilepsy, educational differences,
about epilepsy, feelings about life as a whole, seizure equal-opportunity provisions, cultural norms for conceal-
type and frequency, and country of origin. In this study, ment or disclosure of the condition, the way in which
5 1 % of respondents had feelings of stigma associated those cultures respond to deliberate and unintentional
with their epilepsy compared with 49% who had not. disclosures, problems with the translation of the ques-
This is in contrast with other studies that have found tionnaire, and methodologic problems with the investi-
lower levels of stigma [e.g., both Westbrook et al. (27) gation.
and Buck et al. (30) found that >60% of participants did Multiple regression analysis of the whole sample pro-
not report feeling stigmatised by their epilepsy]. Signifi- duced seven variables that were significant predictors of
cant cross-cultural differences were noted between levels scores on the stigma scale: age at onset, marital status,
of stigma reported by people with epilepsy across Eu- worry about epilepsy, injury, feelings about life as a
rope, with Spanish respondents reporting the lowest lev- whole, general health, and duration of epilepsy; however,
els, and French respondents, the highest. Baker et al. (18) the relevant importance of these varied across the coun-
found similar results in a previous study in which their tries. As mentioned previously, there are a number of
potential explanations for these differences. Determining
TABLE 4. Multiple regression analysis of the variables which explanation is likely to be the most reliable will
for stigma require further extensive research; however, there clearly
exists a real difference between these countries in the
Variable Beta T Sig. T
way they score on the stigma of epilepsy scale and the
Impact 0.43221 3 26.381 0.0000 variables that are likely to influence those scores.
Feelings about life as a whole (QOL) 0.054650 3.721 0.0002
Injury 0.050256 3.197 0.0014 An analysis of the various clinical and demographic
France 0.039420 2.920 0.0035 variables indicate that whereas seizure type and fre-
Duration 0.039946 2.557 0.0106 quency were significantly correlated with scores on the
Seizure frequency 0.037749 2.352 0.0187
Both types of seizures 0.030901 2.295 0.0218 stigma scale, results of the multiple regression showed
Side effects 0.028135 2.087 0.0370 that neither seizure frequency nor seizure type accounted
Employment status -0.027697 -2.030 0.0424 for a significant amount of the variance on scores on the
Sweden -0.049294 -3.75 1 0.0002
Netherlands -0.055641 -4.122 0.0000 stigma scale. One explanation for these findings is that it
Spain -0.072181 -5.283 0.0000 is the mere label of epilepsy per se that induces stigma
Age at onset -0.098128 -6.265 0.0000 and not necessarily the frequency or severity of seizures,
Multiple R (all predictor variables): 0.58; 0.0000; R2 (% variance): its outward manifestation.
0.33; F: 155.52; Sig. F. Unsurprisingly, any injury due to an epileptic attack in
 THE STIGMA OF EPILEPSY 103

TABLE 5. Stepwise multiple regression of variables: dependent variable in each case: stigma
Independent variables that
Country entered the equation Direction of effects R2
France Age at onset“ Increased levels of reported stigma associated with lower age at onset, being 0.36
Married“ unmarried, and reporting more worry about epilepsy
Worry about epilepsy“

Sweden None significant at <0.0005 No findings significant at <O.OOOS 0.29

Italy Feelings about life as a whole’ Increased levels of reported stigma associated with more negative feelings 0.25
about life as a whole
Germany Age at onset“ Increased levels of reported stigma associated with lower age at onset, greater 0.24
Injury” likelihood of injury; more negative feelings about life as a whole, more
Feelings about life as a whole” worry about epilepsy, and worse overall health
Worry about epilepsy”
Health in general”
Switzerland None significant at <O.OOOS No findings significant at <0.0005 0.24
Spain Feelings about life as a wholeh Increased levels of reported stigma associated with more negative feelings 0.23
Duration” about life as a whole and longer duration of epilepsy
Netherlands Injury’ Increased levels of reported stigma associated with greater likelihood of injury, 0.22
Duration“ longer duration of epilepsy, and more worry about epilepsy
Worry about epilepsy“
United Kingdom Age at onset“ Increased levels of reported stigma associated with lower age at onset, greater 0.18
Injury“ likelihood of injury, more negative feelings about life as a whole, and more
Feelings about life as a whole“ worry about epilepsy
Worry about epilepsy“

(i <0.0001.
I’ <0.0005.

the last year increased the probability that the individual
would report higher levels of stigma. The presence of
injuries was a significant predictor for scores on the
stigma scales for respondents from the United Kingdom,
Germany, and the Netherlands. One possible explanation
for this is that injuries such as cuts, bruises, and or frac-
tures may act as further “stigmata” of the condition and
necessitate either disclosure or prevarication to conceal it.
It has been previously suggested (8) that feelings of
stigma due to epilepsy are precursors to the development
of further psychosocial problems. However, Mittan and
Locke (26) disagreed, suggesting that this kind of state-
ment was made without sufficient supportive evidence.
Certainly, stigma has been associated with anxiety, self-
esteem, and depression (6,8,10,27). In our study, ques-
tions that probed psychosocial issues and their relation to
feelings of stigma included “worry about epilepsy,”
“feelings about life as a whole,” and patient-perceived
scores on the impact of epilepsy scale.
Worrying “a lot” about epilepsy was reported by more
than twice as many of the respondents reporting stigma-
tisation when compared with those reporting no stigma at
all. Worry about epilepsy was a significant predictor for
scores on the stigma scales for respondents from France,
Germany, the Netherlands, and the United Kingdom. In-
adequate information about epilepsy may be one expla-
nation, although other explanations may be related to the
effect of having a seizure in public, concern about mor-
tality or the course of the condition, and whether seizures
are likely to be controlled by AED treatment. Further
explanations may well be related to issues regarding dis-
closure and/or potential discrimination. Feelings about
life as a whole ranging from “mostly dissatisfied” to
“terrible” were reported by significantly more stigma-
tised than nonstigmatised respondents. In the regression
analysis, this was a significant predictor for respondents
from Italy, Germany, Spain, and the United Kingdom.
The aetiology of stigma is complex, with multiple ori-
gins. A number of authors cited the importance of pa-
rental reaction to the diagnosis [e.g., shame and conceal-
ment (1,32), or alternatively, overprotection of the child
(16)]. Feelings of stigma may arise as a direct conse-
quence of experiencing others’ fear or worry about hav-
ing to deal with someone having a seizure, and in addi-
tion, the problem may be exacerbated by a lack of accu-
rate information about epilepsy (33) and the prevalence
of stereotypic expectations with regard to the types of
seizures experienced (7,34). The severity of the condi-
tion (14), as defined by seizure type and frequency and
the personality of the individual (35), also may affect the
responses to any direct or indirect experiences of dis-
APPENDIX
The Stigma Scale
Below are some statements about how you feel with or
towards other people. For each statement, if your answer is
YES, choose 1; if NO, choose 0.
YES NO
Because of my epilepsy:
(a) I feel that some people are uncomfortable with me 1 0
(b) I feel some people treat me like an inferior person 1 0
(c) I feel some people would prefer to avoid me 1 0

Epilepsia, Vol. 41, No, I , 1999

104 G. A. BAKER ET AL.
crimination (22). Although this research has shown that
there are a number of factors associated with epilepsy,
we have been unable to identify what factors are going to
be important in understanding why some individual be-
come stigmatised as a result of their epilepsy and why
others do not. We have already proposed that this is an
exploratory study, which should form the basis of future
research.
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