Seizure (2005) 14, 157—163
Factors contributing to the stigma of epilepsy
Sang-Ahm Lee a,*, Hee-Jung Yoo b, Byung-In Lee c, Korean QoL in Epilepsy Study Group
Department of Neurology, Asan Medical Center, University of Ulsan College of Medicine, Seoul, Republic of Korea b Department of Psychiatry, Asan Medical Center, University of Ulsan College of Medicine, Seoul, Republic of Korea c Department of Neurology, Yonsei University College of Medicine, Seoul, Republic of Korea KEYWORDS
Stigma; Epilepsy; Personality; Coping Summary Purpose: To evaluate the factors, including personality and coping styles, likely to be inﬂuential in enhancing the social stigma of epilepsy. Methods: Data were collected from 400 adults with epilepsy recruited from 10 epilepsy centers in Korea. Clinical information about seizures was obtained by neurologists, and other information was collected from self-completed questionnaires, including those measuring stigma scales. Results: Thirty-one percent of people with epilepsy felt stigmatized by their condition and in 9% of these the stigma was severe. Multivariate analysis identiﬁed experiences of actual discrimination from society, introverted personality, problem solving controllability, and emotional subscale of QOLIE-31 as being independently associated with the social stigma of epilepsy. Conclusions: Episodes of discrimination, coping strategies, and personality may be important in feeling the stigma of epilepsy. These ﬁndings may provide a basis for further studies to clarify the causative factors generating the stigma of epilepsy. # 2005 BEA Trading Ltd. Published by Elsevier Ltd. All rights reserved.
Stigma has been conceptualized as ‘‘an attribute that is deeply discrediting’’.1 The stigmatizing nature of epilepsy and its associated psychological distress have been reported to have a signiﬁcant impact on the quality of life of individuals with epilepsy; however, the degree of the felt stigma and its consequences are not equal in every indivi* Corresponding author. Tel.: +82 2 3010 3445; fax: +82 2 474 4691. E-mail address: email@example.com (S.-A. Lee).
dual with epilepsy.2 The factors inﬂuencing the development and maintenance of feelings of stigma are not fully known.3,4 Seizure frequency is considered a factor signiﬁcantly related to felt stigma.5—7 People with well-controlled seizures were less likely to express feelings of stigma if they had been seizure-free for 6 months, but even individuals with infrequent seizures had higher scores on the stigma scale compared with seizure-free patients and 14% of those who were seizure-free for at least 2 years reported feelings of stigma.3 A recent multivariate analysis showed that impact of epilepsy, age of onset, country of origin, feelings about life, and
1059-1311/$ — see front matter # 2005 BEA Trading Ltd. Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.seizure.2005.01.001
62). Patients scored one for each item with which they agreed. epilepsy classiﬁcation. or if they used a concomitant medication with central nervous system effects. who had been diagnosed with any type of epilepsy for a minimum of one year. and history of seizure-related injuries (burn. and lie) with 12 items each. Self-esteem scale We administered the Rosenberg Self-esteem Scale. and preferred to avoid them. We hypothesized that persons with a predisposition to stress vulnerability would be more affected by trivial stress and would be less able to appropriately cope with their chronic illness. Subjects were asked to say whether. and others) in the previous year.13 The Cronbach alpha coefﬁcient of this scale was 0. or active psychiatric or medical disorders that would impair their judgment or have a negative impact on their quality of life beyond the effects caused by epilepsy. Subjects rated the questionnaires in person. 7 related to anxiety and 7 related to depression. progressive neurological disorders. problem-solving conﬁdence (alpha = 0.12 These problems may have a different degree of impact depending on the problem solving style of each individual.71). and 0.
injuries associated with epilepsy were signiﬁcantly related to scores on the stigma scale.
All subjects were asked to ﬁll out questionnaires on the day they visited their neurologist at the outpatient clinic. helplessness (alpha = 0.15 which is composed of 24 items in six scales. Each item has a 4-point response set. the patient is more likely to feel stigmatised. 5 positive and 5 negative and scored on a 4-point Likert scale. were recruited from 10 epilepsy centers in Korea. head trauma. Written informed consent was obtained from all subjects. Hospital anxiety and depression scale This scale consists of 14 items. creative style (alpha = 0. problems have been found to be strongly related to psychological symptomatology.67.
tives in a quiet room. duration of epilepsy.84. 0. The purpose of our study was to investigate whether an individual’s personality or problem solving style was related to the felt stigma of epilepsy. Thus. respectively.11 in that daily problems can lead to psychological distress and poor quality of life. number of antiepileptic drugs. ranging from 0 for no distress to 3 for signiﬁcant distress. Eysenck Personality Questionnaire We used the Korean version of the Eysenck Personality Questionnaire14 short-form.10 In addition.83. Those who agreed to participate were seated by themselves or with accompanying rela-
. avoidance style (alpha = 0. because of their epilepsy. neuroticism. Seizure-related variables included age at seizure onset.9. teeth injury.-A.73). but seizure frequency was not.158
S. consisting of four scales (psychoticism. Stable personality traits are important. Their overall score was the sum of their positive responses. problem-solving control (alpha = 0. seizure frequency.72).16 Individuals are identiﬁed as
Individuals aged 19—65 years. Demographic and clinical data were collected by interviews and from information in their medical ﬁles.73).3 Each of the three items requires a simple yes/no response. Subjects were also excluded if their regimen of antiepileptic drugs had been changed during the past month. they felt that other people were uncomfortable with them. Lee et al. and the completed questionnaires were checked for missing values.8 An individual’s personality and problem solving style. The Cronbach alpha coefﬁcients for these four scales were 0. the higher the score is. may have importance in developing and/or maintaining the felt stigma. treated them as inferior. and approach style (alpha = 0. and a person with a more introverted personality may be more vulnerable to trivial emotional stress and may experience more negative effects than a more extraverted individual. Subjects were excluded if they had focal neurological deﬁcits. which is composed of 10 items. which have not been evaluated with regard to the stigma of epilepsy.4 The methods by which individuals with epilepsy cope with their disorder are complex and as yet relatively under-researched. which is composed of 48 items. 0.58). Problem solving style We used the Korean version of the Problem Solving Style.
Stigma scale Felt stigma was assessed using a scale developed originally to measure patients’ perception of the stigma of stroke and that was subsequently adapted for epilepsy.81. and who were seizure-free for the previous 24 h. extraversion-introversion.81. if they had brain surgery during the past year.
and getting ﬁred). The Cronbach alpha coefﬁcients were 0. timing of seizure occurrence. including sex. energy-fatigue (alpha = 0.
Felt stigma of epilepsy
About 31% of the study participants reported feelings of stigma. The questionnaire consisted of 10 items. a history of generalized tonic-clonic seizures ( p < 0. p = 0.000 ). more episodes of discrimination (r = 0. cognitive functioning (alpha = 0.001). a greater degree of helplessness (r = 0. Univariate analyses showed that several variables were signiﬁcantly associated with the presence of stigma of epilepsy. episodes of actual discrimination. About 43% had generalized seizures in the previous 2 years. getting separated or divorced.275. medical treatment (monotherapy or polytherapy). and employment. history of generalized tonic-clonic seizures.141. including high seizure frequency ( p < 0.000). Problem Solving Style Questionnaire. p = 0. and being insulted). emotional well-being (alpha = 0.05) in univariate analysis. or being treated unfairly by a spouse).62). and close relatives (being shunned or avoided.000) personality.288.000) (Tables 2 and 3). marital status.001).68).000).5% were on monotherapy.000) or more neurotic (r = 0. and their overall score was the sum of their positive responses. p = 0. Eysenck Personality Questionnaire. and 4 related to friends.9 years (range 19—64 years).18 which consisted of subscales for seizure worry (alpha = 0. Higher scores indicate more episodes of discrimination experienced by each subject. borderline depressed/anxious (score 8—10).85). and social functioning (alpha = 0. 3 related to discrimination by members of the opposite sex (being rejected from dating. Each item required a simple yes/no response. The chisquare test was used for univariate analysis of these categorical variables: gender. being treated unfairly at work.01).77 for depression.
31.000). Other variables were not signiﬁcant. 55. duration of epilepsy. Subjects scored one for each item with which they agreed. All independent variables were correlated with the dependent variable: the presence or absence of stigma of epilepsy as assessed by the stigma scale. medication effects (alpha = 0. indicating that they felt highly stigmatized by their disorder (Table 2). and scores on the QOLIE-
. Self-esteem Scale.312. p < 0. 45% having 1—11 seizures per year. About 89% of patients had symptomatic or cryptogenic partial epilepsy.0. age at surgery. three job-related (getting a job. more introverted (r = À0.
Demographic and clinical characteristics of the 400 subjects in the study are shown in Table 1.278. nocturnal tendency of seizure recurrence (more than 90% of seizures during sleep). p = 0.408. history of seizure-related injuries. p = 0.86). age. with 9% answering ‘‘yes’’ to all three items. Questionnaire for episodes of discrimination against people with epilepsy Subjects were asked to say whether.000) and depression (r = 0.000) and problem-solving conﬁdence (r = À0. type of medical treatment. Higher scores in the QOLIE-31 are indicative of a better QOL. Multivariate analysis using logistic regression was performed on variables that were signiﬁcant ( p < 0.69).Factors contributing to the stigma of epilepsy
not clinically depressed/anxious (total score on each sub-scale < 8). of mean age 32. being broken off from a meeting. neighborhood acquaintances.01). and Hospital Anxiety and Depression Scale. and a lower degree of self-esteem (r = À0. being refused a meeting. marital status. and the remaining 21% having one or more seizures per month.300.82 for anxiety and 0. Higher scores on the stigma scale were signiﬁcantly correlated with longer duration of epilepsy (r = 0.196. p = 0. type of epilepsy.444. low level of education ( p = 0. With regard to antiepileptic drug regimen. and a history of seizure-related injuries ( p < 0. p = 0. or clinically depressed/anxious (score ! 11). lower scores on the QOLIE-31 (r = À0. There were 204 men and 196 women. About 20% of the participants had been seizure free for at least 2 years. they experienced actual discrimination in their daily life from other people.144. seizure frequency.81). with 14% having fewer than one seizure per year.
Data were analyzed by SPSS version 10. p = 0.82). p = 0. age at onset. because of their epilepsy.5% were on polytherapy and 44. economic status. seizure remission.05). p = 0. The QOLIE-31 We completed the adaptation of the QOLIE-3117 into a Korean version.000) or a lower degree of problem-solving control (r = À0. overall QOL (alpha = 0. type of epilepsy.201. Student’s T-test and the Pearson correlation test were used to evaluate these continuous variables: age at seizure onset. and about 9% had sustained injuries directly associated with their seizures. economic status. level of education. higher degrees of anxiety (r = 0.
5 14.3 7.0%) Missing value 3 (0.3 5.013 Timing of seizure recurrence Nocturnal 75.3 6.9 8.0 12.8 3.3%) 10 (2.0 9.060
a Data in table represent the calculated percentages on numbers in brackets.7 (1—61) 13.0 9.3%) 130 (32.7 0.9 0.046
11.5%) 355 (88.5%) 1 (0.7 9.0%) 177 (44.0 No 73.7 0.4 14.1 Education level Primary/middle school High school University Economic status High Middle Low Marital status Single Married 53.3%) 134 (33.7 8.0%) 180 (45.-A.8%) 359 (89.6 68.9 14.1 68.9
0.9 No 74.5%) 179 (44.4 73.0 4.9 2.8%) 188 (47.0%) Missing value 7 (1.001
2.5 12.8 10.5 5.8 14.3 13.1 5.1 5.
Table 1 Demographic and clinical features of 400 Korean epileptics.4 73.5 8.5%) 88 (22.4
0.2 70.1 72.1 8.3 8.0%) 83 (20.9 13.9 79.8 15.7 9.3%) Absence 224 (56. Scores on stigma scale 0 Total patients Gender Male Female Seizure remission Yes No Seizure frequency <1/year 1—11/year >1/month 69.8%)
Table 2 Social stigma of epilepsy and its relationship to categorical variables.4 13.4 79.8 0.4 8.1 Not nocturnal 68.3 0.392
17.9 9.5 9.1 13.8
p value —
3 9.8%) 81 (20.7 10.8 77.4 0.2 62.5 15.
.3 11.9 11.3 68.5 14.3%) 43 (10.2 18.3%) 12 (3.8%) 205 (51.5 11.790
Discrimination Experienced 52.8 8. Gender (M/F) Age (year) Age at onset (year) Duration (year) Medical treatment Monotherapy Polytherapy Epilepsy type Idiopathic generalized Crypto/symptomatic partial Undetermined and others Seizure frequency Remission <1/year 1—11/year !1/month 204/196 32.3 40.6 72.5 9.3 12.7 8.1 6.3 Employed 74.3 8.9 7.1 3.3 7.3%) No 344 (86.9 7.000 12.1 0.1 64.7 12.6 5.5 14.3 10. Lee et al.1 9.2 (1—44) 222 (55.3%) 56 (14.3 14.6%) 141 (35.2 11.3 10.140
History of injuries in the last year Yes 31.5 17.6 12.4 Treatment Monotherapy Polytherapy 72.009
Generalized tonic clonic seizures in the last 2 years Presence 173 (43.3 14.8%) 6 (1.4 0.5%)
Generalized tonic clonic seizures in the last 2 years Yes 62.5%) 178 (44.5 65.8%) Injuries in the last year Yes No Missing value Marital status Married Unmarried Others Missing value Employment status Employed Unemployed Housewife/student Missing value Education status Primary or middle school High school University Missing value Economic status High Middle Low Missing value 35 (8.3 4.8%) 11 (2.3 14.000 Epilepsy type Simple partial Complex partial Idiopathic generalized 73.0%) 21 (5.7 7.6 7.0 66.7
13.4 13.4 12.9 Not experienced 80.4 7.0 9.3 8.0 14.8%) More than 90% of seizures during sleep Yes 49 (12.467
Employment status Unemployed 61.5 18.2 15.2 13.5%) 34 (8.6
14.5%) 22 (5.4 68.3 9.5%) 75 (18.6 0.2
0.1 12.1 4.0%) 174 (43.3 8.6 13.9 (19—64) 19.160
S.3 57.3 12.0 4.5
4 10.9 [95% CI = 0.3 [95% CI = 1.31 0.9 4.6 9. avoidance.7 3.024 0.3 58.1 13.005 0.9 2.000 0.4 25.375 0.1 19.2 53.8 15. Logistic regression analysis revealed that several factors were independently associated with feelings of stigma.3 28.7 1.9 25.1 63.9 26.0 18.2 3.0 [95% CI = 1..0 19.046
.1 12.4 4.D.0 8.
Odds ratio 1.000 0.8 2.3 0.
employment status. Factors Discrimination from society Introverted personality Problem solving control Emotional subscale of QOLIE-31
CI.05.0 18.7 14. quality of life.000 0.5 2.6 11.1 12.8 12.114 0.0]).4 2.877 0.07
p value 0. and problem-solving creative.0 3.99 1.7 2.2 3.0 7.05.59 0.051 0.5 18.5 1.9 4.8 2.5 15. This contrasts with the ﬁndings of a recent European study.2 1.8 3.2 12.98 0.9 40.2 3.8 23. OR = 1.000 0.
In our study.9 3.004 0.6 28.1]) (Table 4).0—1.76—0. 18% highly so.0 5.7 49.D.1—1.00 p value
S. problem solving controllability ( p < 0.7 49.8—1.5 18. including experience of actual discrimination ( p = 0.000 0.D.8 16.6 1.541 0. 10.209 0.00—1.5 22.000 0.050 0.5 12. or approach style.8 2. standard deviation. conﬁdence interval.5 12.8 S.6 10.4 63.4 which reported that 51% of participants reported feeling stigmatized.
Table 4 Multivariate analysis of signiﬁcant factors associated with social stigma of epilepsy.5 49.8 6.2 19.6]). antiepileptic drugs. QOL.0 10. OR = 0.0]).2 1.4 10.6 2.Factors contributing to the stigma of epilepsy
Table 3 Relationships of social stigma of epilepsy to various parameters.7 3.4 Stigmatised Mean 33.89 0.5 61.8 5.1 3.0 21.000 0. AEDs.1 74.746 0. Not stigmatised Mean Age (year) Age at onset (year) Duration of epilepsy (year) Number of AEDs Total score on QOLIE-31 Seizure worry Overall QOL Emotional Energy/fatigue Cognitive Medication effects Social Eysenck Personality Scale-Adult Psychoticism Introversion/extraversion Neuroticism Lie Problem solving style Helplessness Controllable Creative Conﬁdence Avoidance Approach Hospital Anxiety and Depression Scale Anxiety Depression Self-esteem Scale Degree of discrimination 32.2 1.000 0. introverted personality ( p < 0.6 2.4 10.038 0.000 0.6 7.8—1.87 1.000 0.8 5.0 3.1 10.09—1.005.8 63.05.9 19.4 68.1 2.2 50.7 0. odds ratio (OR) = 1.000 0.3 2.80—0.03
95% CI 1.0 0.000 0.4 61.8 6.8 10.4 1.0 S. OR = 0.3 0.6 20.
and emotional subscale of the QOLIE-31 ( p < 0.8 3.3 8.7 3.4 49.007 0.9 [95% CI = 0.000 0.000 0. 31% of the participants reported feeling stigmatized by their epilepsy.1 4.557 0. 9% of them highly so. 9.0 50.4 10. the psychoticism and lie subscales on the Eysenck Personality Questionnaire.
Sung-Soo Lee.D.23. Also the emotional subscale of the QOLIE-31. Our result of 31% was similar to that of Spanish respondents.D.162
S. In a 1996 survey in Korea. and emotional subscale of QOLIE-31 were independently correlated with feelings of stigma. cannot be generalized to people with epilepsy throughout Korea. Due to this sampling bias.D. Our results regarding the factors likely to be inﬂuential in the stigma of epilepsy.25 In contrast. Our study population was taken from epilepsy centers throughout Korea and did not include people with epilepsy spread throughout the population.5. and French respondents the highest. some of our data. The proportion who felt highly stigmatized was six times higher in those who experienced discrimination than in those who did not. This is in good agreement with our results of univariate analyses. When they revealed their epilepsy to their prospective
employers. M. employment discrimination was emphasized as a cause of stigma. this ﬁgure rose to 55%.26 In Scambler and Hopkins’ study.24 The reason for the low level of stigmatization observed here need to be explored.23. suggesting that factors other than those related to seizures are important in generating and maintaining the stigma of epilepsy. This psychological dysfunction was also known to be associated with the stigma of epilepsy. About 44% of the participants in our study reported having suffered some form of discrimination due to epilepsy. The authors commented that the simple experience of being discriminated did not necessarily make individual patients feel shameful that they have epilepsy. and about 50% of those who had experience of discrimination said they felt stigmatized. was independently associated with feelings of stigma in our multivariate analysis.3 These inconsistent results regarding the relationship between felt and enacted stigma may be related to signiﬁcant crosscultural differences in public perceptions and attitudes towards epilepsy and people with epilepsy. This was supported by ﬁndings that only 3% of unemployed individuals with epilepsy cited epilepsy as the cause. Our logistic regression analyses revealed that experiences of actual discrimination.: University of Ulsan College of Medicine (Seoul).31 it is evident that the psychological dysfunction in people with epilepsy has the signiﬁcant impact on their quality of life. People with epilepsy are generally considered to be at greater risk of psychopathology than those without the disorder. whereas 32% of subjects believed that their epilepsy made it more difﬁcult for them to get a job. In proposing a sociopsychological model for the stigma of epilepsy. Although it is still not known whether feelings of stigma due to epilepsy are precursors to the development of additional psychosocial problems. including those related to the prevalence of the stigma of epilepsy. M. Hyung-Kook Park. most Koreans with epilepsy have tried to conceal their condition.. although these results should be interpreted with some caution. M.-A. and Byung -In Lee.I.: Yonsei University College of Medicine (Seoul).
.26 felt stigma was far more prevalent than enacted stigma.27 and poor self-esteem28.22 58% of the members of the general public surveyed said that individuals with epilepsy should not be employed as would a normal person. may be generally applicable to people with epilepsy.
The Korean QoL in Epilepsy Study Group comprised the following: Sang-Ahm Lee.. We found that about 75% of the individuals in our survey never disclosed their disease when applying for a job. felt stigma of epilepsy was found to have no direct relationship to episodes of discrimination (enacted stigma) against people with epilepsy.22 compared with Western societies. We found that 21% of individuals with epilepsy in remission for a minimum of two years reported feelings of stigma.
The study was ﬁnancially supported by a grant of Janssen Korea Limited. We found this percentage to be unexpectedly low. problem solving controllability. Increased levels of anxiety and depression3.20 and based on the more negative public attitude toward epilepsy in Korean society21.22 than in Western societies.30. Lee et al. Hee-Jung Yoo. Consequently. which represented the psychological domain. The perception of the general public towards epilepsy has been much more negative in Korean society21. with Spanish respondents reporting the lowest levels. (P.D. Ph.D.29 have been reported to be common psychological problems in people with epilepsy. M.
Signiﬁcant cross-cultural differences were noted between levels of stigma reported by people with epilepsy across Europe.24 About 15% of the participants in our study reported having been refused a job because of their epilepsy. however.). which was the main focus of this study. Kyoung Heo. introverted personality. based on the observation that stigmatization and psychological problems for people with epilepsy are more common in developing countries19.
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