Seizure 20 (2011) 679–685

Contents lists available at ScienceDirect

Seizure
journal homepage: www.elsevier.com/locate/yseiz

A comparative study of health related quality of life, psychological well-being,

impact of illness and stigma in epilepsy and migraine
Nuran Aydemir a,*, Çiğdem Özkara b, Pınar Ünsal c, Reşit Canbeyli d
a
Izmir University of Economics, Faculty of Art and Sciences, Department of Psychology, Sakarya Cad. No: 156, 35330 Balcova, Izmir, Turkey
b
Istanbul University, Cerrahpaşa School of Medicine, Department of Neurology, Istanbul, Turkey
c
Istanbul University, Faculty of Letters, Department of Psychology, Istanbul, Turkey
d
Boğaziçi University, Faculty of Art and Sciences, Department of Psychology, Istanbul, Turkey

A R T I C L E I N F O A B S T R A C T

Article history: This study aimed to show the difference of epilepsy from another chronic neurological disorder with
Received 7 January 2011 episodic manifestations (CDEM): migraine. Seventy persons with epilepsy (PWE), 56 persons with
Received in revised form 23 June 2011 migraine (PWM) and 45 healthy control participants (HCs) were included. The groups were compared in
Accepted 25 June 2011
terms of demographics, quality of life, depression and self-esteem. The PWE and PWM were also
compared with regard to stigma, impact of the illness, disclosure, application of spiritual/traditional
Keywords: healing methods, limitations, most affected life areas, and restrictions. Results showed that the PWM had
HRQOL
lower quality of life values than the PWE and the HCs, while there was no difference among the groups in
Depression
Stigma
depression and self-esteem. Results also show higher unemployment levels and lower marriage rates for
Disclosure the PWE, where education levels were equal. Although the PWM had higher impact of illness values, the
Limitation PWE were shown to have higher stigma, more concealment behavior, and higher traditional/spiritual
Impact of illness healing application ratios. Also, the PWM emphasized the importance of being ‘‘able to fulfil daily living,
Spiritual healing methods social and work activities’’, while the PWE emphasized the need for ‘‘independence’’ constantly. These
results indicate that, although both migraine and epilepsy are CDEMs, they have different levels of
impact on patients’ lives. The impacts are socially greater in epilepsy and extend beyond the neurological
condition itself.
ß 2011 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.

1. Introduction of mythological and superstitious beliefs seem to surround

epilepsy in every culture,19,20 creating a body of unscientific and
Epilepsy is a common chronic neurological disorder which is misguided attitudes. This in turn, leads to the practice of traditional
characterized by recurrent seizures. However, classifying epilepsy and spiritual healing methods, which can be observed across a
merely as a neurological disorder is inadequate since it is also a wide spectrum of cultures.13,21–23
disorder with negative social consequences. Persons with epilepsy Migraine is another very common neurological disorder which
(PWE) usually suffer from unemployment and/or underemploy- is characterized by recurrent attacks of pain and associated
ment, lower marriage rates, and social discrimination.1–4 All these symptoms.24 Both epilepsy and migraine are neurological chronic
factors usually result in an impaired quality of life and low self- disorders with episodic manifestations (CDEMs).25 Although the
esteem, which is intensified by the seizures themselves,5,6 and duration of the symptoms varies greatly in these two disorders,
sometimes even by antiepileptic drug (AED) use.7–9 For most PWE, individuals with either condition may have symptom free periods
a diagnosis of epilepsy is equal to stigmatization,10,11 in particular between attacks/seizures. In both illnesses, neurological attacks
felt stigma,12 which in turn results in concealing epilepsy from can be accompanied by headache as well as by variant
others and spending a great amount of energy on this conceal- gastrointestinal, autonomic and psychological features.26 It is
ment.13–15 This situation also creates a serious psychological believed that both result from brain hyperexcitability.27 Both are
burden and sometimes social restrictions in their lives. Addition- umbrella disorders, each of which constitutes a heterogeneous
ally, many PWE suffer from depression, which also impairs quality family of disorders. In some cases, common drugs – such as,
of life and introduces additional problems.6,16–18 Moreover, a range valproic acid and topiramate – are used in the treatment of
both.28,29 Additionally, like epilepsy, migraine can cause impaired
quality of life,30–33 and generally has a negative impact on life.34
* Corresponding author. Tel.: +90 232 488 85 25; fax: +90 232 279 26 26. Mood disorders, especially anxiety and depression, are also
E-mail address: nuran.aydemir@ieu.edu.tr (N. Aydemir). common comorbid conditions in migraine and epilepsy.30,35

1059-1311/$ – see front matter ß 2011 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.
doi:10.1016/j.seizure.2011.06.017
680 N. Aydemir et al. / Seizure 20 (2011) 679–685

Despite these similarities, however, migraine and epilepsy consti- Table 1

Demographic characteristics of epilepsy, migraine and control groups.
tute different disorders. There are a number of previous studies in
which epilepsy is compared with other chronic illnesses, such as Groups Epilepsy Migraine Healthy control
angina pectoris, rheumatoid arthritis, asthma, chronic obstructive (n = 70) (n = 56) (n = 46)
pulmonary disease, migraine, atopic dermatitis, cerebral palsy, and Sex (%)*
cystic fibrosis.36–39 However, the aim of using migraine as a second Female 68.6 87.5 60.9
research group is to highlight the contrasts between epilepsy and Age (SD)* 32.3 (10.5) 40.5 (10.4) 35.7 (11)
Year of education (SD) 9.2 (3.9) 9.0 (4.4) 9.3 (4.4)
another illness with very similar features. The reason for this is that
Marital status (%)*
observed differences in quality of life between PWE and people with Single 48.6 12.5 15.2
other chronic illnesses with very different symptoms could be Married 42.9 82.1 73.9
attributed to the completely different etiologies and symptoms of Divorced 2.9 – 6.5
Widow 5.7 5.4 4.3
the disorders. By using migraine therefore, it is aimed to examine
Occupational status (%)*
possible differences between epilepsy and a similar illness in order Employed 47.1 33.9 71.7
to eliminate confounding nature of the symptoms and etiologies. Unemployed 14.3 5.4 2.2
Hence, any difference observed could be directly attributed to the Housewife 22.9 41.1 19.6
specific nature of epilepsy. Student 14.3 5.4 4.3
Retired 1.4 4.3 2.2
Therefore, the present study aimed to compare PWE and
*
persons with migraine (PWM) in terms of health related quality of p < 0.00.
life, self-esteem, impact of illness, depression, stigma and
disclosure. Other affected life domains and application of
spiritual/traditional healing methods were also investigated in 2.2. Instruments
order to understand more about what makes epilepsy different.
Based on previous studies, we expected: (1) lower health related 2.2.1. Health related quality of life (HRQOL)
quality of life (HRQOL) values in PWM and PWE than Control We used the Medical Outcomes study short form-36 (SF-36),40
participants (CPs), and in particular that PWM would have lower which consists of eight subscales to evaluate different domains of
HRQOL values on the subscales related with physical health, and HRQOL: (1) physical functioning (PF); (2) role limitations because
PWE have lower values on the subscales related with mental of physical health problems (RP); (3) bodily pain (BP); (4) social
health; (2) higher depression and stigma rates and lower self- functioning (SF); (5) general mental health (psychological distress
esteem values in PWE; (3) higher impact of illness scores in PWM; and psychological well being) (MH); (6) role limitations because of
(4) more application of traditional/spiritual healing methods in emotional problems (RE); (7) vitality (energy/fatigue) (VT); and (8)
PWE; and (5) more concealment of the illness in PWE. general health perception (GH). The total score varies between 0
and 100, with higher scores representing a better quality of life.
2. Methods Although it is a generic measure, SF-36 has been used in previous
quality of life research in epilepsy.7,39,41–50 The validity and
2.1. Participants reliability of SF-36 for Turkish population have been tested by
Demirsoy.51
The epilepsy group consisted of seventy participants diagnosed
with epilepsy at least for four years previously, and who 2.2.2. Depression
experienced at least one seizure within the last two years and/ The Beck Depression Inventory (BDI),52 a 21 item scale, was
or who are still on AEDs. All participants in the epilepsy group had administered to assess the depression levels of the participants.
detailed neurological and neuropsychological evaluations, and The total score varies between 0 and 63, with higher scores
patients with below average IQs (less than 90) were not included in indicating the severity of the depressive symptoms. In the present
the study. Patients with additional serious impairments (e.g. study, 17 was accepted as a cut off point for severe depression. The
hearing, seeing, etc.) and those with other neurological and validity and reliability of the BDI for the Turkish population have
psychiatric disorders were also excluded. been tested by Hisli.53
For the migraine group, 56 adults with migraine were recruited.
The selection criteria were experiencing migraine attacks for an 2.2.3. Stigma
absolute minimum of four years, including at least one attack in the A three item scale developed by Jacoby54 was used. In this scale,
last three months, and continuing treatment at a headache subjects are asked to state whether, because of their epilepsy, they
polyclinic and as well as being on prescribed medication. Likewise, felt that other people are (1) uncomfortable with them, (2) treated
PWM with below average IQs (less than 90), with additional them as inferior, and (3) preferred to avoid them. The subjects
serious impairments, and those with other neurological and marked each item with which they agreed. The subject’s overall
psychiatric disorders were also excluded. Since epilepsy and score (0–30) is the sum of positive responses, therefore the higher
migraine are highly comorbid, patients who have migraine or the score, the greater sense of stigma. The reliability of the scale
epilepsy as a comorbid condition were excluded from the study. All was found to be 0.72.54
the participants with migraine and epilepsy were recruited during
their follow-up appointments in the neurology clinic. 2.2.4. Impact of illness
A control group, consisting 45 healthy adults with no history of The Perceived Impact of Epilepsy Scale, developed by Jacoby
neurological and psychiatric disorders was included. The control et al.55 was administered to determine the impact of epilepsy on
participants (CPs) were matched with the epilepsy and migraine daily life. The scale contains both generic and epilepsy-specific
groups in terms of age, gender, and year of education as far as items. All items cover the most important areas of everyday life,
possible (see Table 1). including relationships with spouse/partners, relationships with
The present study was approved by the Cerrahpaşa School of other close family members, social life/social activities, work,
Medicine, and Faculty of Ethics Committee [31.01.2006, No: 2378] health, relationships with friends, feelings about self, and plans and
at Istanbul University. Additionally, all the participants gave ambitions for the future. When the scale was administered to
inform consent for their participation in the study. patients with migraine, the term ‘‘migraine’’ replaced ‘‘epilepsy’’ in
 N. Aydemir et al. / Seizure 20 (2011) 679–685 681

the items. In this scale, higher scores indicate a greater impact of Table 2
Clinical characteristics of the epilepsy and migraine groups.
the ailment.
Epilepsy group Migraine group
2.2.5. Self-esteem (n = 70) (n = 56)
In order to assess the self-esteem of the participants, the Duration of the illness (SD) 16.6 (10.6) 15.8 (10.1)
Coopersmith Self-Esteem Inventory (CSEI)-Adult version was Duration of the diagnosis* (SD) 14.9 (11.9) 10.0 (8.3)
used.56 Participants were asked to evaluate every item either as Number of medication** (SD) 1.6 (0.8) 2.0 (0.9)
Seizure/attack frequency None: 12.9 None: 0
‘‘like me’’ or ‘‘not like me’’. The scale consists of 25 items. The
(per month) (%)
validity and reliability of the scale for the Turkish population were ten: 72.9 three: 37.5
tested by Turan and Tufan.57 ten: 13.3 three: 62.5
*
Comorbidity (%)
Yes 11.4 42.9
2.2.6. Clinical/demographic questionnaire
Seizure type (%)
In order to collect information about the participants’ clinical Generalized tonic-clonic 45.7
and demographic characteristics different questionnaires were Simple partial 18.8 –
developed for different groups. The questionnaire for the epilepsy Complex partial 21.4
and migraine groups contained questions about seizure/attack Absence 2.9
Myoclony 11.4
frequencies, the amount of medication used, the duration of the
Intractable seizures (%)
illness, the duration of the diagnosis, and the existence of other Yes 58.6 –
chronic conditions. Moreover, participants were asked whether *
p < 0.05.
they had ever concealed their illnesses, and if so the duration of and **
p < 0.02.
reasons for the concealment. Additionally, participants with
epilepsy and migraine were asked about any spiritual healing
methods they may have tried, and their opinion of the effective- p = 0.00) and occupational status (X2 (8, N = 172) = 2.12, p = 0.00)
ness of these methods. Lastly, participants with epilepsy and were found to be significantly different among the groups (see
migraine were asked to report their concerns, limitations and most Table 1).
affected life domains in their own words in order to determine the Results showed that there was no significant difference between
issues of critical importance, which could not be otherwise the epilepsy and migraine groups in terms of their duration of the
detected by scales with predetermined frameworks. Another illness, while there were significant differences between how long
reason was to provide an opportunity for participants to explain they had known their diagnosis (t = 2.75, df = 124, p < 0.00) and the
what it is like to live with these disorders. The CPs’ questionnaire amount of medication currently used (t = 2.63, df = 124, p < 0.02).
sought information only on demographic issues and any chronic There was also a significant difference between the epilepsy and
health conditions. migraine groups in terms of having a comorbidity (X2 (1,
Participants completed the information form first, and then the 126) = 16.56, p = 0.00). The results indicated that the PWE had
epilepsy and migraine groups received the SF-36, BDI, stigma known their diagnosis longer, but that the PWM used a greater
inventory, impact of epilepsy/migraine inventory and CSEI in a amount of medication and were more likely to have a comorbidity.
randomized order, in order to avoid the order effect. The CPs did Additionally, the time gap between the onset of the seizures/attacks
not receive the stigma and the impact of epilepsy/migraine and receiving the diagnosis was only M = 1.73(3.63) years for
inventories, but all other scales were administered in a randomized epilepsy, but M = 5.84(6.7) years for migraine (see Table 2).
order. All administrations were carried out in face to face
interviews by the first author. 3.2. Health related quality of life, depression and self-esteem

2.3. Statistical analysis Results showed that, except for role limitations because of
emotional problems (F < 1) and general mental health (F < 1),
The data were analyzed using SPSS for Windows, version 17. For significant differences were observed in all the other sub-scales of
two grouping variables, t tests for independent samples were used, the SF-36 [physical functioning (F (2, 169) = 11.84, p < 0.00), role
while data for more than two grouping variables were analyzed by limitations because of physical health problems (F (2, 169) = 12.72,
means of One-Way ANOVA. For categorical variables, Chi-Square p < 0.00), bodily pain (F (2, 169) = 21.54, p < 0.00), social
was performed. functioning (F (2, 169) = 4.79, p < 0.01), vitality (F (2, 169) = 8.1,
For the qualitative analysis of the open-ended questions first, all p < 0.00) and general health perception (F (2, 169) = 7.94,
of the answers were transferred to Excel verbatim. Following this, p < 0.00)]. Tukey post hoc analysis revealed that, in physical
open-ended answers were examined by two coders who applied functioning, role limitations because of physical health problems,
content analysis to the raw data. They determined some common bodily pain, social functioning, and vitality subscales, the migraine
themes and categories then classified all answers accordingly, group was at a significant disadvantage compared to the epilepsy
resolving any differences regarding the classification between and control groups. Only in general health perception, CPs had
themselves. Both coders had master’s degrees in psychology, and higher scores than epilepsy and migraine groups (see Fig. 1).
were blind to the aims of the study, but not to the diagnosis of the The results showed that neither depression (F < 1) nor self-
participants. esteem (F < 1) were significantly different among the groups.
When the results were investigated in terms of percentages, 30% of
3. Results the PWE and 25.2% of the PWM were in serious depression,
compared to only 15.1% for the CPs.
3.1. Demographic and clinical characteristics
3.3. Stigma, impact of epilepsy/migraine, and disclosure of the illness
No significant differences were found among the epilepsy,
migraine and control groups in terms of year of education (F < 1). Results indicated significant differences for both stigma (t = 2.75,
On the other hand, age (F (2, 169) = 9.21, p < 0.00), gender (X2 (2, df = 124, p = 0.01) and impact (t = 4.15, df = 124, p = 0.00) of
N = 172) = 0.291, p = 0.01), marital status (X2 (6, N = 167) = 11.09, epilepsy/migraine, such that the PWE reported significantly higher
682 N. Aydemir et al. / Seizure 20 (2011) 679–685

Epilepsy
Migraine
Healthy control
100

90

80
MEAN VALUES 70

60

50

40

30

20

10

0
PF** RP** BP** SF* MH RE VT** GH* BDI CSEI

SUBSCALES OF THE SF-S6, BDI and SELF-ESTEEM

PF: physical functioning; RP: role limitations because of physical health problems; BP: bodily pain; SF: social functioning; MH : general mental health; RE: role limitations because of emotional problems; VT: vitality ;
GH: general health perception ; BDI: Beck Depression Inventory; CSEI: Coopersmith Self-Esteem Inventory .
p< 0.01, p< 0.001

Fig. 1. Mean values of the groups in sub-scales of the quality of life, depression and self-esteem.

stigma, while the impact of the illness was greater on the PWM. fulfil daily living activities’’ and ‘‘the possibility of having a
Serious stigma was observed only in 14.2% of the PWE, while this migraine attack’’. Other reported concerns by the PWE, according
ratio was only 3.6% in PWM. to their report frequencies, were ‘‘being alone while having a
There was also a significant difference in disclosure (X2 (1, seizure’’, ‘‘having an accident or dying due to a seizure’’, ‘‘having a
N = 125) = 29.67, p = 0.00) rates between the epilepsy and migraine child’’, ‘‘ambiguity about the future’’, ‘‘AEDs’’, ‘‘being a burden to
groups. Results showed that none of the migraine participants others’’, ‘‘negative consequences on independence’’, ‘‘deterioration
concealed their condition from others, whereas regarding disclo- in mental health’’ and ‘‘relations with the opposite sex’’. The other
sure, 41% of the PWE had at one point concealed their epilepsy: 31% concerns reported by the PWM were ‘‘long term damage to health
concealed it within the first few years following the diagnosis, caused by migraine’’, ‘‘deterioration in mental health’’, ‘‘relations
while 69% still conceal it. with the opposite sex and family’’, ‘‘ambiguity about the future’’,
and ‘‘low performance at work’’.
3.4. Reasons for concealment of epilepsy The most frequent responses to the question about which were
the most affected life domains due to epilepsy were: ‘‘work/
In order to evaluate the reasons for the concealment of epilepsy, education/family life’’, ‘‘personal independence’’, ‘‘social-physical
the responses were investigated by the two independent coders activities’’, ‘‘cognitive abilities’’, ‘‘psychological well being’’,
mentioned earlier. Any response citing an inner fear of stigmatiza- ‘‘romantic relations’’, ‘‘physical health’’ and ‘‘driving’’. The answers
tion without an actual discriminatory episode was coded as ‘‘felt given by the PWM to the same question were; ‘‘social life/daily
stigma’’; but if there was real experienced discrimination caused by living activities’’, ‘‘relations with the opposite sex and with family’’,
epilepsy, it was coded as ‘‘enacted stigma’’.12 A frequency analysis ‘‘psychological well being’’, ‘‘work/family life’’, ‘‘cognitive abili-
showed that 89.7% of the PWE stated felt stigma as a reason for their ties’’, and ‘‘physical health’’.
concealment. ‘‘I want people to evaluate me as if nothing is wrong To the question about the restrictions caused by epilepsy, the
with me, I am as healthy as they are’’ [F, 35], ‘‘I do not want to divulge responses given by the PWE, in decreasing order of frequencies
it, I do not want to be treated as inferior’’ [M, 21]. Only 10.3% of the were: ‘‘driving’’, ‘‘social-physical activities’’, ‘‘lack of indepen-
PWE concealed their epilepsy because of enacted stigma: ‘‘After dence’’, ‘‘avoiding activities which can trigger a seizure’’, ‘‘educa-
people learned about my epilepsy, they acted with prejudice, so I tion/work life’’ and ‘‘compulsory military service’’. The responses
told just my boss and close friend, no one else’’ [F, 28]. of the PWM to the same question were: ‘‘avoiding activities which
can trigger a migraine attack’’, ‘‘social-physical activities’’, and
3.5. Application of spiritual healing methods ‘‘daily living activities’’.

Among the participants with epilepsy, 55.7% had applied any 4. Discussion
spiritual healing methods, in contrast to only 12.2% of the migraine
participants. The most common applications were lead casting 4.1. Differences in demographics and clinical characteristics
(melting lead and pouring it into cold water over the head of a sick
person in order to break an evil spell), carrying a written charm, The results showed no difference among the groups in their
and consulting a Hodja. The results showed that (X2 (1, level of education, as reported by previous studies.1,4,58 However,
N = 125) = 24.47, p = 0.00) the PWE applied spiritual healing the PWE were more likely to be unmarried and unemployed when
methods to a significantly greater extent than the PWM. However, compared with the PWM and the CPs, a finding consistent with
92% of the PWE evaluated spiritual methods as not beneficial, as previous reports.1,4,59 The point to emphasize here is that the lower
did 95.2% of the migraine group. There was no difference between marriage and higher unemployment rates in the PWE were not
the PWE and the PWM in their evaluation of spiritual healing related to the level of education, which was approximately equal
methods as non-beneficial. across the groups. Therefore, this suggests that other possible
reasons, such as felt and/or enacted stigma may be responsible.60
3.6. Most reported concerns, affected life domains, and restrictions When the epilepsy and migraine groups were compared in
terms of their clinical characteristics, it was found that the epilepsy
For the PWE the most frequently reported concern was ‘‘having group had been aware of their diagnosis for longer than the
a seizure outdoors’’, while for the PWM it was ‘‘being unable to migraine group. This difference is probably caused by the feeling of
 N. Aydemir et al. / Seizure 20 (2011) 679–685 683

urgency to consult a physician after experiencing a seizure. On the needed in particular to understand the effects of intractable
other hand, the PWM used more medication and had more seizures.
comorbid conditions than the PWE.
4.3. Impact of illness, stigma, and disclosure
4.2. Quality of life, depression and self-esteem
In accordance with our expectations, the impact of migraine
In terms of the quality of life results, contrary to expectations, was found to be higher than the impact of epilepsy. Although the
the PWE only scored lower than the CPs on the general health PWM were shown to have lower quality of life and higher impact of
perception subscale of the SF-36, while on the other subscales the illness scores and there was no difference between the epilepsy
scores of the two groups were comparable. As expected, and and migraine groups in depression and self-esteem, stigma is more
consistent with previous studies,31,32,61,62 the PWM received lower prominent in the PWE, as we expected. Therefore, stigma seems
scores in physical functioning, role limitations because of physical uniquely associated with epilepsy, independent of the neurological
health problems, bodily pain, social functioning and vitality symptoms and psychological well-being. The percentage of the
subscales than the epilepsy and the CPs, showing a lower quality PWE with a high level of stigma in the present study is also
of life among the PWM. This finding is also in contrast to studies consistent with previous results.42,54,73,74 Another interesting
which showed that PWE have lower quality of life scores when finding, also in line with our expectations, was that almost half
compared to general reference population,7,41,48,49 and to a recent the PWE have concealed/or still conceal their illness, whereas none
study,36 that compared epilepsy, migraine and diabetes, finding of the PWM ever did. This result alone shows that epilepsy is a
that PWE are more likely than PWM to rate their health as only disorder with considerable negative social connotations. In the
‘‘fair’’ and ‘‘poor’’. A small number of studies have shown that if the present study, among those who concealed their epilepsy at some
seizures are under control, PWE have similar quality of life values point, only about a quarter stopped concealment within few years
to general population.63–65 In the present study however, more of following diagnosis, while most still continue to do so. Hence,
than half of the participants had intractable seizures. The rather than being just a reaction to the initial astonishment, shock
comparable scores in HRQOL scores between the epilepsy group and ambiguity of the diagnosis, concealment seems to relate to
and the CPs in the present study are reflected in previous studies. more serious, long term concerns and almost all the PWE stated felt
For example, in a study by Stavem et al.39 PWE were compared stigma as a reason.
with participants with other diseases, and were found to have
higher quality of life values. The researchers suggest that PWE have 4.4. Application of spiritual treatments
better overall health perception than people with many other
chronic illnesses.39 As in the present study’s finding, Aldenkamp A final finding which shows the unique nature of epilepsy as
et al.58 found that only 6% of participants with epilepsy had lower being more than simply a neurological disorder was the clearer
quality of life values. Additionally, previous studies from other tendency of the PWE compared to the PWM to resort to spiritual
Muslim and collectivistic countries such as Tunisia,43 Jordan,66 healing methods as expected. Despite this tendency, most
Bahrain, Lebanon and Qatar41 support the present study’s findings. participants evaluated these methods as non-beneficial. In a
This could be explained by the effect of Islamic religion which similar study, Small et al.75 found that Pakistani Muslims with
emphasizes acceptance of God’s will in every condition, and tends epilepsy living in England simultaneously seek help from
to regard attitudes which are hostile to the idea of destiny as a physicians and from religious healers. In explanation, the
major act of sinfulness. Also, as stated by Kağıtçıbaşı,67 the concept researchers point to the hybrid culture that the participants were
of culture of relatedness (collectivism) prominent in the afore- exposed to, and to the neurological and spiritual components to
mentioned countries, refers to contexts and relational patterns which epilepsy is attributed to. This explanation is also likely to be
characterized by relations between connected, expanding and valid for Turkish individuals with epilepsy because of the influence
therefore, partially overlapping selves, which have diffuse of both Eastern and Western values.
boundaries (p110).67 Therefore, in these societies with closely
knit human/family relations, the family unit could serve as a buffer 4.5. Most reported concerns, limitations and affected life domains
to soften the negative impacts of a chronic illness, which include
impacts on the patient’s quality of life. In order to clarify our In the present study the PWE and the PWM were asked to report
understanding of the HRQOL in both Muslim and collectivistic their concerns, limitations and most affected life domains in their
countries, more research is needed. Another explanation, sug- own words to determine critically important issues in their lives. A
gested by Selai et al.68 may be that rather than considering epilepsy categorization of the answers indicated that the most reported
as part of their general well being, PWE treat it as a separate entity. concern for the PWE was ‘‘having a seizure outdoors’’ followed by
A final explanation could be the generic structure of the SF-36. ‘‘being alone during a seizure’’, which are in accordance with
Since the SF-36 contains items which specifically aim to assess previous findings.76–78 As previously highlighted,76,78,79 fear of
pain and the limitations it causes, it may be more sensitive to seizure, and of seizure-related death can cause an impaired
illnesses like migraine. psycho-social adaptation to epilepsy, the higher the degree of these
Contrary to our expectations, the present results for depression fears, the greater the psychopathological risk. These concerns
show no difference among the PWE, the PWM and the CPs. should be treated with sufficient consideration to reduce the
Although more than half of the participants had intractable impact of such limitations on the lives of PWE in general. The most
epilepsy, only one-third of the participants with epilepsy were important concern reported by the PWM was ‘‘not fulfilling their
found to be depressed, consistent with previous studies.18,46,64,69,70 daily/social activities’’ which is an expected concern since during
Regarding self-esteem, again contrary to expectations, the PWE the migraine attack most of the PWM were unable to perform daily
were no different from the PWM and the CPs. This finding is also in domestic and work related activities.
accordance with previous reports.15,71 On the other hand, there are As their most affected life domain, the PWE reported ‘‘Work/
studies that indicate that self-esteem is negatively affected by education/family life’’. The most affected life domain reported by
epilepsy-related variables, such as the existence of intractable the PWM was ‘‘social life/daily living activities’’. Lastly, both the
seizures, side effects and the amount of AEDs.72 The contradictory epilepsy and migraine groups were asked to report the limitations
results from different studies so far indicate that further research is caused by their illnesses. ‘‘Driving’’ was the most reported concern
684 N. Aydemir et al. / Seizure 20 (2011) 679–685

by Turkish adults with epilepsy, in common with their Western 2. Chaplin JE, Wester A, Tomson T. Factors associated with the employment
problems of people with established epilepsy. Seizure 1998;7:299–303.
counterparts.80–82 The most reported category by the PWM was 3. Beran RG. The burden of epilepsy for the patient: the intangible costs. Epilepsia
‘‘avoiding behaviours which can trigger a migraine attack’’. 1999;40(8):40–3.
When the answers given by the PWE to the three open-ended 4. Strine TW, Kobau R, Chapman DP, Thurman DJ, Price P, Balluz LS. Psychological
distress, comorbidities, and health behaviors among U.S. adults with seizures:
questions were investigated, only ‘‘independence’’ emerged as a results from the 2002 National Health Interview Survey. Epilepsia
common category. The main reason for this is likely to be the 2005;46(7):1133–9.
overprotective behaviours of families toward individuals with 5. Cramer JA. Quality of life for people with epilepsy. Neurologic Clinics
1994;12(1):1–13.
epilepsy, starting immediately after diagnosis, which can damage 6. Jacoby A, Baker GA, Sten N, Potts P, Chadwick DW. The clinical course of epilepsy
the self-esteem and independence of patients.5 Especially in a and its psychosocial correlates: findings from a U.K. community study. Epilepsia
country like Turkey with very strong family ties, this situation 1996;37(2):148–61.
7. Sillanpää M, Haataja L, Shinnar S. Perceived impact of childhood-onset epilepsy
tends to result in a family-dependent patient. For this reason, most
on quality of life as an adult. Epilepsia 2004;45(8):971–7.
of the PWE were unable to travel alone or access higher education, 8. Meador KK. Cognitive effects of epilepsy and of antiepileptic medications. In:
and were therefore likely to be unemployed. Wyllie E, editor. The treatment of epilepsy: principles and practice. USA: William
& Wilkins; 1996. p. 1121–30.
9. Hunt SM, McKenna SP. The measurement of quality of life of people with
4.6. Limitations of the study epilepsy. In: Hopkins A, Shorvon S, Cascino G, editors. Epilepsy. 2nd ed. Chap-
man & Hall; 1995. p. 581–91.
The most important limitation of the present study is the 10. Jacoby A. Stigma, epilepsy, and quality of life. Epilepsy & Behavior 2002;3:10–20.
11. Morell MM. Stigma and epilepsy. Epilepsy & Behavior 2002;3:21–5.
demographic differences among the three study groups, especially 12. Scambler G, Hopkins A. Generating a model of epileptic stigma: the role of
between the epilepsy and migraine groups in terms of their attack/ qualitative analysis. Social Science and Medicine 1990;30(11):1187–94.
seizure frequencies. Another limitation is the selection of 13. Aydemir N, Trung DV, Snape D, Baker GA, Jacoby A. Multiple impacts of epilepsy
and contributing factors: findings from an ethnographic study in Vietnam.
participants from a hospital rather than the general population, Epilepsy & Behavior 2009;16:512–20.
since some findings indicate that, especially for migraine, such 14. Tröster H. Disclose or conceal? Strategies of information management in
patients are more likely to have severe migraine, more frequent persons with epilepsy. Epilepsia 1997;38(11):1227–37.
15. Westbrook LE, Bauman LJ, Shinnar S. Applying stigma theory to epilepsy: a test
attacks and more comorbid illnesses (Clouse and Osterhaus, 1994, of a conceptual model. Journal of Pediatric Psychology 1992;17:633–49.
cited in Ref. 31]. Additionally, patients under the care of a 16. Robertson MM, Trimble MR. Depressive illness in patients with epilepsy: a
neurologist in a hospital setting may be different from those review. Epilepsia 1983;24(2):109–16.
17. Hermann BP, Whitman S. Behavioral and personality correlates of epilepsy: a
without this opportunity in terms of their seizure/attack control
review, methodological critique, and conceptual model. Psychological Bulletin
and adjustment to their illness. Therefore, the epilepsy and 1984;95(3):451–97.
migraine patients in this study may not be representative the 18. Gilliam FG, Santos J, Vahle V, Carter J, Brown K, Hecimovic H. Depression in
general migraine and epilepsy population. epilepsy: ignoring clinical expression of neuronal network dysfunction. Epi-
lepsia 2004;45(2):28–33.
19. Devinsky O. Religious experiences and epilepsy. Epilepsy & Behavior 2003;4:76–7.
5. Conclusion 20. Ozer IJ. Images of epilepsy in literature. Epilepsia 1991;32(6):798–809.
21. Danesi MA, Adetunji JB. Use of alternative medicine by patients with epilepsy: a
survey of 265 epileptic patients in a developing country. Epilepsia
In contrast to many previous studies, the present study showed 1994;35(2):344–51.
that the participants with a high number of intractable seizures 22. Şayligil Ö. Today and in the past of epilepsy. Unpublished Master’s Thesis. Uludağ
had quality of life, psychological well being, and self-esteem values University, Bursa; 1987 [in Turkish].
23. Jacoby A, Wang W, DangVu T, Snape D, Aydemir N, Parr J, et al. Meanings of
not dissimilar to those of the CPs. On the other hand, almost half of epilepsy in its socio-cultural context and implications for stigma: findings from
the PWE had concealed/still conceal their epilepsy. Additionally, ethnographic studies in local communities in China and Vietnam. Epilepsy &
the higher unemployment and lower marriage rates, and impaired Behavior 2008;12:286–97.
24. Headache Classification Committee of the International Headache Society. The
personal independence indicate that PWE still struggle, especially international classification of headache disorders (2nd ed.). Cephalalgia
with social problems. Furthermore, comparisons with the PWM 2004;24:1–160.
indicate that the probable causes of these problems extend beyond 25. Haut SR, Bigal ME, Lıpton RB. Chronic disorders with episodic manifestations:
focus on epilepsy and migraine. The Lancet Neurology 2006;5:148–57.
the neurological condition itself. 26. Andermann F. Migraine and epilepsy: an overview, epilepsy and migraine. In:
Andermann F, Lugares E, editors. Epilepsy and migraine. Boston: Butterworth
Conflict of interest Publishers; 1987. p. 405–22.
27. Andermann E, Andermann F. Migraine-epilepsy relationships: epidemiological
and genetic aspects. In: Andermann F, Lugares E, editors. Epilepsy and migraine.
The authors declare no conflict of interest. The present study Boston: Butterworth Publishers; 1987. p. 281–91.
was approved by the Istanbul University, Cerrahpaşa School of 28. Brandes JL, Saper JR, Diamond M, Couch JR, Lewis DW, Schmitt J, et al.
Topiramate for migraine prevention. Journal of the American Medical Association
Medicine, Faculty of Ethics Committee [31.01.2006, No: 2378]. We 2004;291:965–73.
also confirm that we have read the Journal’s position on issues 29. Cutrer FM, Limmroth V, Moskowitz MA. Possible mechanisms of valproate in
involved in ethical publication and affirm that this report is migraine prophylaxis. Cephalalgia 1997;17:93–100.
30. Lipton RB, Hamelsky SW, Kolonder KB, Steiner MB, Stewart WF. Migraine,
consistent with those guidelines. quality of life, and depression. Neurology 2000;55:629–35.
31. Lipton RB, Liberman JN, Kolonder KB, Bigal ME, Dowson A, Stewart WF.
Acknowledgments Migraine headache disability and health-related quality of life: a population
based case–control study from England. Cephalalgia 2003;23:411–50.
32. Terwindt GM, Ferrari MD, Tijhuis M, Groenen SMA, Picavet HSJ, Launer LJ. The
I would like to thank Dr. Ann Jacoby and Dr. Gus Baker, whom I impact of migraine on quality of life in the general population. Neurology
see as my honorary advisors, for their valuable comments and for 2000;55:624–9.
33. Valesco De IR, Gonzales N, Etxeberria Y, Garcia-Monco JC. Quality of life in
their permission to use Stigma and Impact of Epilepsy Scales. Also, I migraine patients: a qualitative study. Cephalalgia 2003;23:892–900.
am deeply grateful to all of the participants for their contributions 34. Breslau N, Rasmussen BK. The impact of migraine. Neurology 2001;56(1):4–12.
to the study without any personal benefits for themselves (N.A). 35. Breslau N, Schultz LR, Stewart WF, Lipton RB, Lucia VC, Welch KMA. Headache
and major depression: is the association specific to migraine? Neurology
2000;54(2):308–18.
References 36. Hinnell C, Williams J, Metcalfe A, Patten SB, Parker R, Wiebe S, et al. Health
status and health-related behavior in epilepsy compared to other chronic
1. Jalava M, Sillanpaa M, Camfield C, Camfield P. Social adjustment and compe- conditions: a national population-based study. Epilepsia 2010;51(5):853–61.
tence 35 years after onset of childhood epilepsy: a prospective controlled study. 37. Petersen C, Schmidt S, Power M, Bullinger M. Development and pilot-testing of a
Epilepsia 1997;38(6):708–15. health-related quality of life chronic generic module for children and adolescents
 N. Aydemir et al. / Seizure 20 (2011) 679–685 685

with chronic health conditions: a European perspective. Quality of Life Research 59. Shackleton DP, Kasteleijn-Nolst Trenite DGA, Craen AJM, Vanderbroucke JP,
2005;14:1065–77. Westendorp RGJ. Living with epilepsy. Long-term prognosis and psychosocial
38. Fernandes PT, Salgado PCB, Noronha AA, Barbosa FD, Souza EAP, Sander JW. outcomes. Neurology 2003;61:64–70.
Prejudice towards chronic diseases: comparison among epilepsy, AIDS and 60. Smeets VMJ, Van Lierop BAG, Vanhoutvin JPG, Aldenkamp AP, Nijhuis FJN. Epilepsy
diabetes. Seizure 2007;16:320–3. and employment: literature review. Epilepsy & Behavior 2007;10:354–62.
39. Stavem K, Lossius MI, Kvien TK, Guldvog B. The health-related quality of life of 61. Arnold R, Ranchor AV, Sanderman R, Kempen GIJM, Ormel J, Suurmeijer TPBM.
patients with epilepsy compared with angina pectoris, rheumatoid arthritis, The relative contribution of domains of quality of life to overall quality of life for
asthma and obstructive pulmonary disease. Quality of Life Research 2002 different chronic diseases. Quality of Life Research 2004;13:883–96.
A;9:865–71. 62. Turner-Bowker D, Bayliss MS, Ware JE, Kosinski M. Usefulness of the SF-8 health
40. Ware JE, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. survey for comparing the impact of migraine and other conditions. Quality of
Conceptual framework and item selection. Medical Care 1992;30(6):473–83. Life Research 2003;12:1003–12.
41. Baker GA, Jacoby A, Gorry J, Doughty J, Ellina V. Quality of life of people with 63. Birbeck GL, Hays RD, Cui X, Vickery BG. Seizure reduction and quality of life
epilepsy in Iran, the Gulf and Near East. Epilepsia 2005;46(1):132–40. improvements in people with epilepsy. Epilepsia 2002;43(5):535–8.
42. Aydemir N, Özkara Ç., Canbeyli R, Tekcan A. Changes in quality of life and self- 64. O’Donoghue MF, Goodridge DMG, Redhead K, Sander J, Duncan JS. Assessing the
perspective related to surgery in patients with temporal lobe epilepsy. Epilepsy psychosocial consequences of epilepsy: a community-based study. British
& Behavior 2004;5:735–42. Journal of General Practice 1999;49:211–4.
43. Mrabet H, Mrabet A, Zouari B, Ghachem R. Health-related quality of life of 65. Stavem K, Loge JH, Kaasa S. Health status of people with epilepsy compared
people with epilepsy compared with a general reference population: a Tunisian with a general reference population. Epilepsia 2000;41(1):85–90.
Study. Epilepsia 2004;45(7):838–43. 66. Bahou YG, Jaber SB, Kasasbeh AS. Quality of life in epilepsy at Jordan University
44. Szaflarski JP, Szaflarski M. Seizure disorders, depression, and health-related Hospital. Neurosciences 2011;16(1):18–23.
quality of life. Epilepsy & Behavior 2004;5:50–7. 67. Kağıtçıbaşı C. Family, self, and human development across cultures. 2nd ed.
45. Bishop M, Berven NL, Hermann BP, Chan F. Quality of life among adults with Lawrence Erlbaum Associates; 2007.
epilepsy. Rehabilitation Counseling Bulletin 2002;45(2):87–95. 68. Selai CE, Elstner K, Trimble MR. Quality of life in pre and post epilepsy surgery.
46. May TW, Pfäfflin M. The efficacy of an educational treatment program for Epilepsy Research 1999;38(1):67–74.
patients with epilepsy (MOSES): results of a controlled, randomized study. 69. Tellez-Zenteno JF, Patten SB, Jette N, Williams J, Wiebe S. Psychiatric comor-
Epilepsia 2002;43(5):539–49. bidity in epilepsy: a population-based analysis. Epilepsia 2007;48(12):2336–44.
47. Buck D, Jacoby A, Baker GA, Ley H, Steen N. Cross-cultural differences in health 70. Adewuya AO, Ola BA. Prevalence of and risk factors for anxiety and depressive
related quality of life of people with epilepsy: findings from a European study. disorders in Nigerian adolescents with epilepsy. Epilepsy & Behavior 2005;6:342–7.
Quality of Life Research 1999;8:675–85. 71. Hills MD, Baker PG. Relationships among epilepsy, social stigma, self-esteem,
48. Leidy NK, Elixhauser A, Vickrey B, Means E, Willian MK. Seizure frequency and and social support. Journal of Epilepsy 1992;5:231–8.
the health related quality of life of adults with epilepsy. Neurology 72. Gauffin H, Landtblom AM, Räty L. Self-esteem and sense of coherence in young
1999;53:162–6. people with uncomplicated epilepsy: a 5-year follow-up. Epilepsy & Behavior
49. Wagner AK, Bungay KM, Kosinski M, Bromfield EB, Ehrenberg BL. The health 2010;17:520–4.
status of adults with epilepsy compared with that of people without chronic 73. Lee S, Yoo H, Lee BI. Factors contributing to the stigma of epilepsy. Seizure
conditions. Pharmacotherapy 1996;16(1):1–9. 2005;14:157–63.
50. Vickrey BG, Hays RD, Graber J, Rausch R, Engel Jr J, Brook RH. A health related 74. Jacoby A, Snape D, Baker G. Epilepsy and social identity: the stigma of a chronic
quality of life instrument for patients evaluated for epilepsy surgery. Medical neurological disorder. The Lancet Neurology 2005;4:171–8.
Care 1992;30(4):299–319. 75. Small N, Ismail H, Rhodes P, Wright J. Evidence of cultural hybridity in
51. Demirsoy AD. The MOS SF-36 Health survey: A validation study with a Turkish responses to epilepsy among Pakistani Muslims Living in the UK. Chronic Illness
Sample. Unpublished Master’s Thesis. Boğaziçi University: Istanbul; 1999. 2005;1:165–77.
52. Beck AT, Ward CH, Mendelson M, Mock J, Erbaough J. An inventory for 76. Chaplin JE, Lasso RY, Shorvon SD, Floyd M. National general practice study of
measuring depression. Archives of General Psychiatry 1961;4:561–8. epilepsy: the social and psychological effects of a recent diagnosis of epilepsy.
53. Hisli N. Beck depresyon envanterinin üniversite öğrencileri için geçerliliği ve British Medical Journal 1992;304:1416–8.
güvenirliği [The validity and reliability of Beck depression inventory for 77. Fisher RS, Vickery BG, Gibson P, Hermann B, Penovich P, Scherer A. The impact
university students]. Psikoloji Dergisi 1989;7:3–13. [in Turkish]. of epilepsy from the patient’s perspective. I. Description and subjective percep-
54. Jacoby A. Felt versus enacted stigma: a concept revisited evidence from a study tions. Epilepsy Research 2000;41:39–51.
of people with epilepsy in remission. Social Science and Medicine 78. Mittan RJ. Fear of seizures. In: Whitman S, Hermann BP, editors. Psychopathol-
1994;38(2):269–74. ogy in epilepsy: social dimensions. New York: Oxford University Press; 1986. p.
55. Jacoby A, Baker GA, Smith DF, Dewey M, Chadwick DW. Measuring the impact 90–121.
of epilepsy: the development of a novel scale. Epilepsy Research 1993;16:83–8. 79. Goldstein J, Seidenberg M, Peterson R. Fear of seizures and behavioral func-
56. Coopersmith S. Self-esteem inventories. Palo Alto, CA: Consulting Psychology tioning in adults with epilepsy. Journal of Epilepsy 1990;3(2):101–6.
Press Inc.; 1986. 80. Gilliam FG, Kuzniecky R, Faught E, Black L, Carpenter G, Schrodt R. Patient-
57. Turan N, Tufan B. A study on the reliability and validity of Coopersmith Self- validated content of epilepsy-specific quality of life measurement. Epilepsia
esteem inventory. XIII national psychiatry and neurological sciences congress. 1997;38(2):233–6.
1987. 81. Martin R, Vogtle L, Gilliam F, Faught E. What are the concerns of older adults
58. Aldenkamp AP, Van Donselaar CA, Flamman A, Lafarre DLW. Psychological living with epilepsy. Epilepsy & Behavior 2005;7:297–300.
reactions to the epilepsy in an unselected group of patients with epilepsy under 82. Hayden M, Penna C, Buchanan N. Epilepsy: patient perceptions of their condition.
treatment in general hospitals. Seizure 2003;12:101–6. Seizure 1992;1:191–7.