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Attitudes towards epilepsy among a sample of Turkish patients with epilepsy
Epilepsy & Behavior 62 (2016) 66–71
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Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
Attitudes towards epilepsy among a sample of Turkish patients with epilepsy☆ Kubra Yeni a, Zeliha Tulek a,⁎, Nerses Bebek b, Ozlem Dede b, Candan Gurses b, Betul Baykan b, Aysen Gokyigit b a b
Istanbul University, Florence Nightingale Faculty of Nursing, Istanbul, Turkey Istanbul University, Istanbul Faculty of Medicine, Department of Neurology, Istanbul, Turkey
a r t i c l e
i n f o
Article history: Received 28 March 2016 Revised 20 June 2016 Accepted 21 June 2016 Available online 21 July 2016 Keywords: Epilepsy Attitude Knowledge Psychological factors
a b s t r a c t Objective: The attitude of patients with epilepsy towards their disease is an important factor in disease management and quality of life. The aim of this study was to define the attitudes of patients with epilepsy towards their disease and the factors that affect their attitudes. Patients and method: This descriptive study was performed on patients admitted to an epilepsy outpatient clinic of a university hospital between May and September 2015. The sample consisted of 70 patients over 18 years of age with a diagnosis of epilepsy and no health problem other than epilepsy. Patients with no seizure in the last two years were excluded. The Epilepsy Attitude Scale was used to evaluate attitudes of the patients towards epilepsy; the Epilepsy Knowledge Scale, Rotter's Locus of Control Scale, Hospital Anxiety and Depression Scale (HADS), and the Quality of Life in Epilepsy-10 (QOLIE-10) were used to investigate the attitude-related factors. Results: Among the 70 participants, 43 were female, and the mean age was 31.4 years. The educational level of the patients was lower (primary school) in 38.6% of the sample, and 18.6% were unemployed. Time since diagnosis was 15.1 years, 75.7% of the participants had generalized type of seizures, and more than half had seizures more frequently than once a month. The mean score of the attitude scale was 59.7 ± 6.62 (range: 14–70). The attitudes of the patients towards epilepsy were found to be related to their educational status, living alone, and the attitudes of their families. The attitude scores were also related to the level of knowledge on epilepsy, stigma, and depression. Furthermore, the attitude was found to be correlated with quality of life. Conclusion: Patients with epilepsy had moderate-to-good attitude towards their disease. It was observed that the attitude was related to the knowledge, stigma, and depression rather than to demographic factors and the seizures, and furthermore, the attitude was found to be correlated with quality of life. © 2016 Elsevier Inc. All rights reserved.
1. Introduction Epilepsy is a neurological disease that affects individuals of a society regardless of age, gender, or race; but still, it is a social tag in which a patient is exposed to stigma and discrimination because of the nature of the seizures, the affected social life and daily activities of the patients, the insufficient knowledge regarding the disease within the society, and the incorrect beliefs and negative attitudes towards the disease [1,2]. Although the seizures can be controlled with medical treatment in approximately 70% of the patients, prejudice regarding the disease continues worldwide [3]. In particular, in underdeveloped or developing countries, the disease is believed to be mediated by supernatural or mystic forces or to be a kind of mental disorder or infectious disease,
☆ This study was presented in the National Congress of Neurology, 27 Nov–1 Dec 2015, Antalya. ⁎ Corresponding author at: Istanbul Universitesi Florence Nightingale Hemsirelik Fakultesi, Abidei Hurriyet Cd., 34387, Sisli, Istanbul, Turkey. Tel.: +90 532 776 2993. E-mail address: [email protected] (Z. Tulek).
http://dx.doi.org/10.1016/j.yebeh.2016.06.022 1525-5050/© 2016 Elsevier Inc. All rights reserved.
rendering exclusion of the patient or isolation by the society [4,5]. This situation is not totally different in developed countries where incorrect beliefs or negative attitudes towards patients with epilepsy still continue. For example, patients with epilepsy in European countries were reported to feel stigmatized, and this rate varied between 31% and 69% [1,6]. Insufficient knowledge and incorrect beliefs about epilepsy lead to the development of negative attitudes and behaviors towards the patients, psychosocial problems (marriage, occupation, education), increased stigmatization, and impaired quality of life [7]. It is not only the society, which is responsible for the knowledge and attitude that affect the quality of life and self-management of the patients, but also the knowledge and attitudes of the patients themselves [8]. Another situation that has been related to the development of a positive or negative attitude towards the disease is the “locus of control” factor. Patients with high external locus of control relate the disease to external factors such as fate, luck, or other factors (family, doctor, nurse, friends). It has been reported that patients with high external locus of control have worse attitudes than those with high internal
K. Yeni et al. / Epilepsy & Behavior 62 (2016) 66–71
locus of control [9]. This point may indicate that higher internal locus of control would lead to a positive attitude towards the disease and increased compliance. It has further been reported that patients with a positive attitude towards epilepsy have better quality of life. On the contrary, insufficient knowledge on the disease and the belief that the disease would bring about important medical and psychosocial adverse consequences (such as impairment in cognition, damage to the brain, inability to continue education) complicate patient self-management and selfsufficiency and impair the quality of life [10]. Studies show that, in addition to the increased self-efficacy and social support, supporting patients in developing positive attitudes and behaviors towards their disease is effective in improving self-management [11,12]. Therefore, it is very important to determine the attitudes and the related factors in patients with epilepsy. Although there are numerous studies regarding knowledge and the attitude of the society in epilepsy literature, there is limited research on the patients' attitudes towards their own disease. The aim of this study was therefore to determine the attitudes of patients with epilepsy towards the disease and to identify the factors related to these attitudes. 2. Material and methods The study was conducted at the Epilepsy Outpatient Clinic of Istanbul University, Istanbul Faculty of Medicine, between May and September 2015. The inclusion criteria were the following: being over 18 years of age, having a well documented diagnosis of epilepsy, taking antiepileptic medications, ability to understand and speak the Turkish language, having at least one seizure within the last two years, and willing to participate in the study. A total of 70 patients fulfilling the inclusion criteria comprised the sample of the study. Patients with other diseases that may seriously affect the quality of life (such as cognitive disability or major depression) were excluded from the study. The ethical approval was obtained from the Local Ethical Committee before the data collection. Written informed consents were obtained from all participants. A patient information form was used to collect information on the personal and disease-related characteristics, and the Epilepsy Attitude Scale was used to investigate the attitudes of the patients towards epilepsy. The Rotter's Locus of Control Scale and Hospital Anxiety and Depression Scale (HADS) and the Quality of Life in Epilepsy Inventory10 (QOLIE-10) were used to investigate correlations with the attitude scale scores. 2.1. Epilepsy Attitude Scale To determine the attitudes towards epilepsy, the Epilepsy Attitude Scale, developed by Aydemir, was used [13]. The scale comprises 14 items with five-point Likert and evaluates attitudes of participants towards epilepsy and patients with epilepsy. Its score varies between 14 and 70, and high scores express a positive attitude towards epilepsy. Validity and reliability of the scale were demonstrated, and Cronbach's alpha value was found to be 0.84 [13]. 2.2. Epilepsy Knowledge Scale The Epilepsy Knowledge Scale, comprising 16 items, was also developed by Aydemir [13]. The items in the scale evaluate the knowledge on medical and social dimensions of the disease and the first aid interventions during a seizure. The possible answers to the questions in the scale are “true”, “false”, or “have no idea”. The minimum and maximum scores to be obtained from the scale are 0 and 16, respectively. A higher score indicates a higher level of knowledge. Validity and reliability of the scale were demonstrated, and Kuder Richardson value was found to be 0.72.
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2.3. Stigma scale The stigma scale of Jacoby [14] was used to define the stigma felt by patients with epilepsy. In this scale, the patients are asked if other people 1) were comfortable with them when they were there, 2) acted towards them as if they were invaluable, or 3) preferred to be away from them, and patients answered “yes” or “no”. However, the scale was then revised, and the answers were Likert quadruple-like [15]. In the revised stigma scale, a 0 score indicates no stigma, a score of 1–6 indicates stigma ranging from mild to moderate, and a score between 7 and 9 indicates high stigma. The scale has good internal consistency (0.85) and good concurrent validity. 2.4. Rotter's Locus of Control Scale The Rotter's [16] Locus of Control Scale measures the generalized expectancies for internal versus external control of reinforcement. Individuals with a strong internal locus of control believe that events in their life derive primarily from their own actions while those with a strong external locus of control tend to attribute control to external factors such as faith or luck. The validity of the Turkish version was studied by Dag et al. [17,18]. The scores obtained from the scale vary between 0 and 23. High scores indicate high belief on the external locus of control. Cronbach's alpha value was found to be 0.71, and test–retest correlation was 0.83 [17]. 2.5. Hospital Anxiety and Depression Scale This scale was developed by Zigmond and Snaith [19] to determine the risk of anxiety and depression. Seven of the items evaluate anxiety, and seven evaluate depression. The validity and reliability study in Turkish was performed by Aydemir et al. [20]. Cutoff values were reported as 10 for anxiety and 7 for depression in a Turkish population. The range of the scores to be obtained from the scale is 0 to 21 for each scale. Cronbach's alpha value was found to be 0.85 for anxiety and 0.77 for depression. The correlation coefficients for concurrent validity were 0.75 for anxiety and 0.72 for depression [20]. 2.6. Quality of Life in Epilepsy Inventory-10 (QOLIE-10-P) This scale questions how epilepsy affects the daily activities and general health of the patients. The scale revised by Cramer et al. [21] consists of 10 items and is a shortened form of a longer quality-of-life scale in patients with epilepsy. The scale consists of three subscales: Epilepsy effects, mental health, and role functioning. The validity and reliability in Turkish were shown by Mollaoglu et al. [22] and confirmed a three-factor structure as the original questionnaire. The authors reported good concurrent validity with Nothingham Health Profile. 2.7. Statistical analysis The statistical analysis of the data was performed using the SPSS 21.0 program. Nonparametric tests were selected since the Kolmogorov Smirnov test showed that our data were not normally distributed. Descriptive statistics were used to present frequencies. Spearman correlation was used to show the association between Epilepsy Attitude Scale and continuous variables. Mann–Whitney U test was used to compare Epilepsy Attitude Scale scores through dichotomous factors and Kruskal–Wallis test when a factor has more than two categories. 3. Results Sociodemographic and disease-related characteristics of the sample are presented in Table 1. When the patients were asked whether their life had been affected or not by the disease, 24 patients reported that they had to hide their
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K. Yeni et al. / Epilepsy & Behavior 62 (2016) 66–71
Table 1 Sociodemographic and disease-related characteristics of the patients.
Table 2 Psychosocial problems experienced by the patients because of epilepsy.
Characteristics
n
%
Problems
Age (mean, SD, range) Gender Male Female Education Primary school High school University Income High Moderate Low Having health insurance Yes No Marital status Single/divorced Married Living with someone Living with family Living alone Other Age of disease onset (mean, SD, range) Duration of epilepsy (year) (mean, SD, range) Type of seizure Focal Generalized Seizure frequency per month in the previous year No seizure Less than one More than one Home setting arrangement for preventing injury Yes No Comorbidity Yes No Use of epilepsy medication Monotherapy Polytherapy Use of medication regularly Yes No Attendance to regular follow-ups Yes No Seeking nonmedical help Yes No
31.7 ± 9.7 (18–70)
–
27 43
38.6 61.4
27 21 22
38.6 30.0 31.4
13 50 7
18.6 71.4 10.0
59 11
84.3 15.7
41 29
58.6 41.4
64 3 3 16.7 ± 10.2 (0–54) 15.1 ± 11.3 (1–63)
91.4 4.3 4.3 – –
17 53
24.3 75.7
6 27 37
8.6 38.6 52.9
5 65
7.1 92.9
Concealing the epilepsy diagnosis Yes No Problems in private life due to epilepsy No Yes Was rejected as a spouse (n = 21) Did not want to marry (n = 21) Experiencing problems in marriage (n = 21) Has a boy or girl friend but could not tell the diagnosis (n = 21) Drop out of school because of epilepsy Employment Yes No Left Problems in employment (n = 41) Because of epilepsy Other than epilepsy Having driving license Yes No Driving actively (n = 25) Yes No Reason for not driving Because of epilepsy Other than epilepsy Exemption from military service (n = 27) Yes No Change in family attitude since the epilepsy No Be overprotective Be more supportive
9 61
12.9 87.1
31 39
44.3 55.7
60 10
85.7 14.3
63 7
90.0 10.0
30 40
42.9 57.1
n
%
24 46
34.3 65.7
49 21 4 6 9 2 12
70.0 30.0 19.0 28.6 42.9 9.5 17.1
29 38 3
41.4 54.3 4.3
16 25
39.0 61.0
25 45
35.7 64.3
8 17
32.0 68.0
12 5
70.6 29.4
13 14
48.1 51.9
7 43 20
10.0 61.4 28.6
of onset, the duration of diagnosis, type and frequency of the seizures, and presence of a comorbidity (p N 0.05) (Table 5). The correlations between each scale which were used in the study were assessed (Table 6). Significant correlations were obtained between the attitude scale and the knowledge scale (p = 0.001), the quality-of-life scale (epilepsy effects subscale) (p = 0.002), the stigma scale (p = 0.026), and the HADS depression (p = 0.001). There were no correlations between the attitude scale and the HADS anxiety and the locus of control scale. 4. Discussion
disease. Twelve patients had left school or could not attend school because of epilepsy. Among the 25 patients who had driving licenses, 12 could not drive because of their disease, and half of the 27 male patients had been exempted from the compulsory military service because of epilepsy (Table 2). The mean score of the Epilepsy Attitude Scale was found to be 59.7 ± 6.62 (range: 40–70). The mean scores of the study scales are presented in Table 3. When the attitude scores were evaluated according to the sociodemographic characteristics, it was observed that attitude did not significantly correlate with the age, gender, income, and marital status. However, the attitude scores were higher in the group with high educational level compared with those in the group with lower education (p = 0.013). Furthermore, the mean scores of the patients who lived with their families/friends were higher than for those living alone (p = 0.04). The attitude of patients with protective families was significantly better than that of others (p = 0.022) (Table 4). When the attitude scores were evaluated according to the disease characteristics, they did not significantly change according to the age
Although there are numerous studies regarding attitude towards epilepsy among general populations, the number of studies carried out among patients with epilepsy regarding attitude is limited. While a study from Ethiopia reports positive attitude towards the disease [23], a study from Iran [24] reports that the percentage of the patients who stated that they should not marry an individual with epilepsy was 13%, that they should not participate in social activities was 22%, Table 3 Mean scores of the study scales. Scales
Mean ± SD
Range
Epilepsy Attitude Scale Epilepsy Knowledge Scale Stigma scale Rotter's Locus of Control Scale HADS anxiety scale HADS depression scale QOLIE-10: Epilepsy effects QOLIE-10: Mental health QOLIE-10: Role functioning
59.7 ± 6.62 12.1 ± 2.7 2.07 ± 3.01 10.5 ± 3.32 6.8 ± 3.65 6.2 ± 4.14 55.4 ± 30.7 49.0 ± 12.2 60.6 ± 28.1
40–70 2–16 0–9 2–19 0–17 0–15 0–100 23.3–70 0–100
K. Yeni et al. / Epilepsy & Behavior 62 (2016) 66–71 Table 4 Epilepsy Attitude Scale scores according to the sociodemographic characteristics.
Age Gender Female Male Education Primary school High school and more Income Good Moderate Low Marital status Single/divorced Married Living with someone Living with family/friends Living alone Change in family attitude following diagnosis No Overprotective More supportive
Mean ± SD
Median
p
–
–
0.434
60.9 ± 5.79 57.7 ± 7.46
61.0 58.0
0.087
57.6 ± 6.33 61.0 ± 6.53
59.0 62.0
0.013
62.6 ± 4.15 59.3 ± 6.56 56.5 ± 9.30
63.0 60.0 61.0
00.193
59.0 ± 6.83 60.7 ± 6.28
60.0 61.0
0.244
59.9 ± 6.62 53.6 ± 3.05
61.0 53.0
0.040
57.0 ± 3.78 61.2 ± 6.30 57.4 ± 7.33
58.0 61.0 57.0
0.022
and that they have the tendency towards violence was 25%. In a study carried out many years ago in UK, however, it was reported t hat when patients with epilepsy were compared with the healthy controls, patients demonstrated a more positive attitude towards epilepsy [25]. However, Aydemir et al.'s study [26] showed that there was no difference between the patient and control groups, and the attitude had been found to be good in both groups. As a matter of fact, it is difficult to compare these studies with each other because they used different methods, different questions, or different scales. Evaluation using a single universal scale will simplify the comparison between different studies and will eliminate incorrect conclusions. In our study, the mean score of the Epilepsy Attitude Scale was found to be 59.7 ± 6.62 (range: 40–70), which demonstrates the positive attitudes among patients. This result is comparable with results of Aydemir et al.'s [26] study which was performed in another hospital of the same university. However, the study by Degirmenci et al. [27] demonstrates that this positive attitude cannot be generalized for the Turkish population. In this study, which was carried out in a small city in Turkey, while 66.2% of the patients would not permit their children to marry an individual with epilepsy, 25.4% of the patients were against employing an individual with epilepsy. In our study, these rates were determined as 14.3% and 7.1%, respectively. In Degirmenci et al.'s [27] study, the level of education of the patients being lower than that of our study group supports the positive relationship between the educational level and the attitude. Our finding of a more positive attitude among the higher education group further supports the relation between education and attitude. Since one of the most important factors that affect the negative attitudes of patients is an incorrect belief, an Table 5 Comparison of the Epilepsy Attitude Scale scores according to the disease characteristics.
Age of onset Duration of epilepsy Type of seizure Focal Generalized Seizure frequency per month in previous year No seizure Less than one More than one Having a comorbidity Yes No
Mean ± SD
Median
p
– –
– –
0.810 0.669
58.7 ± 7.04 60.0 ± 6.51
60.0 61.0
0.528
62.5 ± 6.05 60.2 ± 7.64 58.8 ± 5.87
60.5 61.0 60.0
0.300
57.7 ± 7.29 60.0 ± 6.53
61.0 60.0
0.404
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observation of a more positive attitude towards the disease in patients with high educational level is expected. As the level of education increases, these incorrect beliefs decrease, and thus, a positive attitude towards the disease would be predicted to develop. When the attitude scores were evaluated according to sociodemographics, a significant difference was also found for living conditions. The better attitude towards the disease observed in patients living with their families may be explained by the social support they receive from them. A negative correlation between the social support and the level of stigma has been reported in previous studies [28–31]. Naturally, the attitudes of patients with a low level of stigma would be more positive. In the present study, a negative correlation was determined between the attitude scale and the stigma scale. The positive impact of the overprotective behaviors of the families after the diagnosis onto the attitude scores is notable. It has been reported that being protective towards patients with epilepsy may decrease their autonomy and may reduce the rate of school or work attendance [32]. However, in the present study, the protective attitude of the families may be felt as social support by the patients, and this may have influenced their attitudes positively. When the attitude scores were evaluated according to the disease characteristics, they did not significantly change according to the age of onset, the duration of diagnosis, type and frequency of the seizures, and presence of a comorbidity. There are numerous studies [33] reporting the importance of some disease characteristics in stigma literature, but as far as we know, there is no such report regarding attitude. When attitude was correlated with patient knowledge, stigma, locus of control, and anxiety and depression, significant correlations were obtained between the attitude scale and the knowledge scale and the stigma scale. The mean of epilepsy knowledge score was moderate to good in our sample. The findings from an earlier study from another hospital of the same university [26] are comparable with our results. In both studies, it can be said that the level of knowledge of the patients was above the midlevel and nearly good. However, in a previous study [34] which was carried out in ten European countries including Turkey as a representative of eastern Europe, it was stated that the knowledge levels of patients regarding epilepsy in Turkey were lower than that of other countries. This situation demonstrates that there is need for educational programs directed towards patients with epilepsy in Turkey. A negative correlation between the knowledge and stigma has been reported in previous studies; stigma decreases with the increase in the level of knowledge [35–37]. In our study, a negative correlation was determined between stigma and the attitude as well. Causing psychosocial problems, stigma may impact the patient's attitude towards their own disease. Our sample, when compared with the general population, had some problems regarding employment and marriage. It was determined that 18.6% of patients with epilepsy were unemployed, and this rate was higher than the unemployment rate (11.1%) of the Turkish population [38]. This condition demonstrates that patients with epilepsy may have problems in finding jobs in our study. In addition, 30% of the patients had stated that they faced problems in their private lives, that they were not accepted as spouses, or that they did not wish to get married because of the disease. When marriage rate is compared with national data, our sample's marriage rate is lower than of the general population (41.1% vs 65%) [39]. Also, Aydemir et al. [32] have demonstrated in a study including groups with epilepsy and migraines and a healthy control group that patients with epilepsy encounter problems regarding marriage. It was observed that percentages of married people in the groups were 82.1% for the group with migraines, 73.9% for the healthy control group, and only 42.9% for the group with epilepsy. Our study, in which 41.1% of the patients were married, demonstrates a similarity to the aforementioned study. Another factor of which impact on attitude was investigated in this study was locus of control. It has been reported that a high internal locus of control in patients with epilepsy is important in
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Table 6 Correlations between the Epilepsy Attitude Scale, Epilepsy Knowledge, stigma, Locus of Control, anxiety and depression and quality-of-life scales. Scales Attitude scale Knowledge scale Stigma scale Locus of Control HADS anxiety HADS depression QOLIE-10: epilepsy effects QOLIE-10: mental health QOLIE-10: role functioning
r p r p r p r p r p r p r p r p r p
Attitude scale
Knowledge scale
Stigma scale
Locus of Control
HADS anxiety
HADS depression
QOLIE-10: epilepsy effects
QOLIE-10: mental health
QOLIE-10: role functioning
– – 0.384 0.001 −0.267 0.026 −0.054 0.660 −0.223 0.064 −0.404 0.001 0.307 0.010 0.026 0.828 0.211 0.080
−0.215 0.074 −0.164 0.175 −0.048 0.691 −0.101 0.404 0.179 0.137 −0.146 0.227 0.043 0.725
0.094 0.441 0.283 0.018 0.282 0.018 −0.255 0.033 −0.067 0.579 −0.336 0.004
0.423 0.001 0.353 0.003 −0.220 0.068 −0.090 0.459 −0.046 0.706
0.664 0.000 −0.473 0.001 −0.373 0.001 −0.361 0.002
−0.461 0.001 −0.354 0.003 −0.338 0.004
0.275 0.021 0.565 0.001
0.335 0.005
– –
Bold values show a level of significance b 0.05.
developing a positive attitude towards the disease, and better coping and self-management [9]. However, no correlation was determined between the locus of control and the attitude in our study. This situation may be due to the structure of the scale. Although the validity and the reliability of the scale were carried out on Turkish university students, studying the validity and reliability of this scale in this special patient population may be recommended. Another factor that was negatively correlated with the attitude was depression, which is also expected. Depression has an important correlation with the feeling of stigma. A positive correlation between stigma and depression has been reported in previous studies [37,40,41]. Naturally, the level of depression would increase with an increase in stigma, and in turn, this would reflect onto the attitude. Furthermore, it should be considered that a negative correlation was determined between the anxiety level and the attitude scores in our study, although it was not significant. A positive correlation was determined between the attitude scores of the patients and epilepsy effects subscale of the QOLIE-10. Thus, it may be concluded that a positive attitude towards the disease increases the quality of life. Furthermore, when the positive correlation of the knowledge and attitude is considered, it is expected that well informed patients would have positive attitudes and this, in turn, would reflect positively onto their quality of life [10,42]. There are some limitations to this study which should be considered when results are interpreted. Although the study was performed in a metropolitan city in which one-fifth of the Turkey population reside, our small sample size makes it difficult to generalize our results. Also, this study cannot be generalized to other Turkish individuals with epilepsy who are not receiving hospital treatment. Since there is a limited number of studies on this subject, it was difficult to compare our results with literature. 5. Conclusions We conclude that the attitudes of the Turkish patients with epilepsy were moderate to good. Furthermore, it was observed that knowledge on epilepsy was an important factor for a positive attitude towards the disease. Educating patients about their disease would be effective in reducing depression and increasing the quality of life, in addition to increasing their knowledge and awareness. Source of funding None declared.
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the Turkish version of the hospital anxiety and depression scale). Turk Psikiyatri Derg 1997;8:280–7. Cramer JA, Perrine K, Devinsky O, Meador K. A brief questionnaire to screen for quality of life in epilepsy: the QOLIE-10. Epilepsia 1996;37(6):577–82. Mollaoglu M, Mollaoglu M, Durna Z. Epilepsili Hastalarda Yaşam Kalitesi Ölçeği'nin (QOLIE-10) Geçerlilik ve Güvenilirliği (validity and reliability of the quality of life in epilepsy inventory (QOLIE-10) for Turkey). Arch Neuropsychiatry 2016. http://dx.doi.org/10.5152/npa.2016.13809. Kassie GM, Kebede TM, Duguma BK. Knowledge, attitude, and practice of epileptic patients towards their illness and treatment in Jimma University specialized hospital, Southwest Ethiopia. N Am J Med Sci 2014;6(8):383. Ghanean H, Jacobsson L, Nojomy M. Self-perception of stigma in persons with epilepsy in Tehran, Iran. Epilepsy Behav 2013;28(2):163–7. Dawkins JL, Crawford PM, Stammers TG. Epilepsy: a general practice study of knowledge and attitudes among sufferers and non-sufferers. Br J Gen Pract 1993;43(376): 453–7. Aydemir N, Unsal P, Ozkara C. Epilepsisi olan bireylerin epilepsiye dair sahip oldukları tutum, bilgi ve bilgi kaynakları (attitudes, knowledge and sources of knowledge towards epilepsy among patients with epilepsy). Epilepsi 2011;17(3):90–6. Degirmenci Y, Ozisik Karaman HI, Bakar C. Perceptions of epilepsy of three different groups in Turkey. Epilepsy Behav 2010;19(3):315–22. Baker GA. People with epilepsy: what do they know and understand, and how does this contribute to their perceived level of stigma? Epilepsy Behav 2002;3(6S2): 26–32. Van Brakel WH. Measuring health-related stigma — a literature review. Psychol Health Med 2006;11(3):307–34. Rafael F, Houinato D, Nubukpo P, Dubreuil CM, Tran DS, Odermatt P, et al. Sociocultural and psychological features of perceived stigma reported by people with epilepsy in Benin. Epilepsia 2010;51(6):1061–8.
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[31] Bautista RED, Shapovalov D, Shoraka AR. Factors associated with increased felt stigma among individuals with epilepsy. Seizure 2015;30:106–12. [32] Aydemir N, Ozkara C, Unsal P, Canbeyli R. A comparative study of health related quality of life, psychological well-being, impact of illness and stigma in epilepsy and migraine. Seizure 2011;20(9):679–85. [33] Jacoby A, Snape D, Baker GA. Epilepsy and social identity: the stigma of a chronic neurological disorder. Lancet Neurol 2005;4(3):171–8. [34] Doughty J, Baker GA, Jacoby A, Lavaud V. Cross-cultural differences in levels of knowledge about epilepsy. Epilepsia 2003;44(1):115–23. [35] Leaffer EB, Hesdorffer DC, Begley C. Psychosocial and sociodemographic associates of felt stigma in epilepsy. Epilepsy Behav 2014;37:104–9. [36] Ryu HU, Lee SA, Eom S, Kim HD, Korean QoL in Epilepsy Study Group. Perceived stigma in Korean adolescents with epilepsy: effects of knowledge about epilepsy and maternal perception of stigma. Seizure 2015;24:38–43. [37] Lee SA, Yoo HJ, Lee BI, Korean QoL in Epilepsy Study Group. Factors contributing to the stigma of epilepsy. Seizure 2005;14:157–63. [38] Turkiye Istatistik Kurumu (TUİK) (National Institute of Statistics), İşgücü İstatistikleri (employment statistics). http://www.tuik.gov.tr/PreHaberBultenleri.do?id=21570; 2016. [Accessed: 01.05.2016]. [39] Aile ve Sosyal Politikalar Bakanlığı (Ministry of Family and Social Policies). Türkiye'de Evlilik Tercihleri (preferences for marriage in Turkey), Nisan. http://www.ailetoplum. aile.gov.tr/data; 2015. [Accessed: 18.05.2016]. [40] Smith ML. Psychosocial comorbidity in epilepsy. Adv Neurol 2006;97:333–7. [41] Viteva E. Stigmatisation of patients with epilepsy: a review of the current problem and assessment of the perceived stigma in Bulgarian patients. Epilepsy Behav 2012; 25:239–43. [42] Hirfanoglu T, Serdaroglu A, Cansu A, Soysal AS, Derle E, Gucuyener K. Do knowledge of, perception of, and attitudes towards epilepsy affect the quality of life of Turkish children with epilepsy and their parents? Epilepsy Behav 2009;14(1):71–7.
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Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
Attitudes towards epilepsy among a sample of Turkish patients with epilepsy☆ Kubra Yeni a, Zeliha Tulek a,⁎, Nerses Bebek b, Ozlem Dede b, Candan Gurses b, Betul Baykan b, Aysen Gokyigit b a b
Istanbul University, Florence Nightingale Faculty of Nursing, Istanbul, Turkey Istanbul University, Istanbul Faculty of Medicine, Department of Neurology, Istanbul, Turkey
a r t i c l e
i n f o
Article history: Received 28 March 2016 Revised 20 June 2016 Accepted 21 June 2016 Available online 21 July 2016 Keywords: Epilepsy Attitude Knowledge Psychological factors
a b s t r a c t Objective: The attitude of patients with epilepsy towards their disease is an important factor in disease management and quality of life. The aim of this study was to define the attitudes of patients with epilepsy towards their disease and the factors that affect their attitudes. Patients and method: This descriptive study was performed on patients admitted to an epilepsy outpatient clinic of a university hospital between May and September 2015. The sample consisted of 70 patients over 18 years of age with a diagnosis of epilepsy and no health problem other than epilepsy. Patients with no seizure in the last two years were excluded. The Epilepsy Attitude Scale was used to evaluate attitudes of the patients towards epilepsy; the Epilepsy Knowledge Scale, Rotter's Locus of Control Scale, Hospital Anxiety and Depression Scale (HADS), and the Quality of Life in Epilepsy-10 (QOLIE-10) were used to investigate the attitude-related factors. Results: Among the 70 participants, 43 were female, and the mean age was 31.4 years. The educational level of the patients was lower (primary school) in 38.6% of the sample, and 18.6% were unemployed. Time since diagnosis was 15.1 years, 75.7% of the participants had generalized type of seizures, and more than half had seizures more frequently than once a month. The mean score of the attitude scale was 59.7 ± 6.62 (range: 14–70). The attitudes of the patients towards epilepsy were found to be related to their educational status, living alone, and the attitudes of their families. The attitude scores were also related to the level of knowledge on epilepsy, stigma, and depression. Furthermore, the attitude was found to be correlated with quality of life. Conclusion: Patients with epilepsy had moderate-to-good attitude towards their disease. It was observed that the attitude was related to the knowledge, stigma, and depression rather than to demographic factors and the seizures, and furthermore, the attitude was found to be correlated with quality of life. © 2016 Elsevier Inc. All rights reserved.
1. Introduction Epilepsy is a neurological disease that affects individuals of a society regardless of age, gender, or race; but still, it is a social tag in which a patient is exposed to stigma and discrimination because of the nature of the seizures, the affected social life and daily activities of the patients, the insufficient knowledge regarding the disease within the society, and the incorrect beliefs and negative attitudes towards the disease [1,2]. Although the seizures can be controlled with medical treatment in approximately 70% of the patients, prejudice regarding the disease continues worldwide [3]. In particular, in underdeveloped or developing countries, the disease is believed to be mediated by supernatural or mystic forces or to be a kind of mental disorder or infectious disease,
☆ This study was presented in the National Congress of Neurology, 27 Nov–1 Dec 2015, Antalya. ⁎ Corresponding author at: Istanbul Universitesi Florence Nightingale Hemsirelik Fakultesi, Abidei Hurriyet Cd., 34387, Sisli, Istanbul, Turkey. Tel.: +90 532 776 2993. E-mail address: [email protected] (Z. Tulek).
http://dx.doi.org/10.1016/j.yebeh.2016.06.022 1525-5050/© 2016 Elsevier Inc. All rights reserved.
rendering exclusion of the patient or isolation by the society [4,5]. This situation is not totally different in developed countries where incorrect beliefs or negative attitudes towards patients with epilepsy still continue. For example, patients with epilepsy in European countries were reported to feel stigmatized, and this rate varied between 31% and 69% [1,6]. Insufficient knowledge and incorrect beliefs about epilepsy lead to the development of negative attitudes and behaviors towards the patients, psychosocial problems (marriage, occupation, education), increased stigmatization, and impaired quality of life [7]. It is not only the society, which is responsible for the knowledge and attitude that affect the quality of life and self-management of the patients, but also the knowledge and attitudes of the patients themselves [8]. Another situation that has been related to the development of a positive or negative attitude towards the disease is the “locus of control” factor. Patients with high external locus of control relate the disease to external factors such as fate, luck, or other factors (family, doctor, nurse, friends). It has been reported that patients with high external locus of control have worse attitudes than those with high internal
K. Yeni et al. / Epilepsy & Behavior 62 (2016) 66–71
locus of control [9]. This point may indicate that higher internal locus of control would lead to a positive attitude towards the disease and increased compliance. It has further been reported that patients with a positive attitude towards epilepsy have better quality of life. On the contrary, insufficient knowledge on the disease and the belief that the disease would bring about important medical and psychosocial adverse consequences (such as impairment in cognition, damage to the brain, inability to continue education) complicate patient self-management and selfsufficiency and impair the quality of life [10]. Studies show that, in addition to the increased self-efficacy and social support, supporting patients in developing positive attitudes and behaviors towards their disease is effective in improving self-management [11,12]. Therefore, it is very important to determine the attitudes and the related factors in patients with epilepsy. Although there are numerous studies regarding knowledge and the attitude of the society in epilepsy literature, there is limited research on the patients' attitudes towards their own disease. The aim of this study was therefore to determine the attitudes of patients with epilepsy towards the disease and to identify the factors related to these attitudes. 2. Material and methods The study was conducted at the Epilepsy Outpatient Clinic of Istanbul University, Istanbul Faculty of Medicine, between May and September 2015. The inclusion criteria were the following: being over 18 years of age, having a well documented diagnosis of epilepsy, taking antiepileptic medications, ability to understand and speak the Turkish language, having at least one seizure within the last two years, and willing to participate in the study. A total of 70 patients fulfilling the inclusion criteria comprised the sample of the study. Patients with other diseases that may seriously affect the quality of life (such as cognitive disability or major depression) were excluded from the study. The ethical approval was obtained from the Local Ethical Committee before the data collection. Written informed consents were obtained from all participants. A patient information form was used to collect information on the personal and disease-related characteristics, and the Epilepsy Attitude Scale was used to investigate the attitudes of the patients towards epilepsy. The Rotter's Locus of Control Scale and Hospital Anxiety and Depression Scale (HADS) and the Quality of Life in Epilepsy Inventory10 (QOLIE-10) were used to investigate correlations with the attitude scale scores. 2.1. Epilepsy Attitude Scale To determine the attitudes towards epilepsy, the Epilepsy Attitude Scale, developed by Aydemir, was used [13]. The scale comprises 14 items with five-point Likert and evaluates attitudes of participants towards epilepsy and patients with epilepsy. Its score varies between 14 and 70, and high scores express a positive attitude towards epilepsy. Validity and reliability of the scale were demonstrated, and Cronbach's alpha value was found to be 0.84 [13]. 2.2. Epilepsy Knowledge Scale The Epilepsy Knowledge Scale, comprising 16 items, was also developed by Aydemir [13]. The items in the scale evaluate the knowledge on medical and social dimensions of the disease and the first aid interventions during a seizure. The possible answers to the questions in the scale are “true”, “false”, or “have no idea”. The minimum and maximum scores to be obtained from the scale are 0 and 16, respectively. A higher score indicates a higher level of knowledge. Validity and reliability of the scale were demonstrated, and Kuder Richardson value was found to be 0.72.
67
2.3. Stigma scale The stigma scale of Jacoby [14] was used to define the stigma felt by patients with epilepsy. In this scale, the patients are asked if other people 1) were comfortable with them when they were there, 2) acted towards them as if they were invaluable, or 3) preferred to be away from them, and patients answered “yes” or “no”. However, the scale was then revised, and the answers were Likert quadruple-like [15]. In the revised stigma scale, a 0 score indicates no stigma, a score of 1–6 indicates stigma ranging from mild to moderate, and a score between 7 and 9 indicates high stigma. The scale has good internal consistency (0.85) and good concurrent validity. 2.4. Rotter's Locus of Control Scale The Rotter's [16] Locus of Control Scale measures the generalized expectancies for internal versus external control of reinforcement. Individuals with a strong internal locus of control believe that events in their life derive primarily from their own actions while those with a strong external locus of control tend to attribute control to external factors such as faith or luck. The validity of the Turkish version was studied by Dag et al. [17,18]. The scores obtained from the scale vary between 0 and 23. High scores indicate high belief on the external locus of control. Cronbach's alpha value was found to be 0.71, and test–retest correlation was 0.83 [17]. 2.5. Hospital Anxiety and Depression Scale This scale was developed by Zigmond and Snaith [19] to determine the risk of anxiety and depression. Seven of the items evaluate anxiety, and seven evaluate depression. The validity and reliability study in Turkish was performed by Aydemir et al. [20]. Cutoff values were reported as 10 for anxiety and 7 for depression in a Turkish population. The range of the scores to be obtained from the scale is 0 to 21 for each scale. Cronbach's alpha value was found to be 0.85 for anxiety and 0.77 for depression. The correlation coefficients for concurrent validity were 0.75 for anxiety and 0.72 for depression [20]. 2.6. Quality of Life in Epilepsy Inventory-10 (QOLIE-10-P) This scale questions how epilepsy affects the daily activities and general health of the patients. The scale revised by Cramer et al. [21] consists of 10 items and is a shortened form of a longer quality-of-life scale in patients with epilepsy. The scale consists of three subscales: Epilepsy effects, mental health, and role functioning. The validity and reliability in Turkish were shown by Mollaoglu et al. [22] and confirmed a three-factor structure as the original questionnaire. The authors reported good concurrent validity with Nothingham Health Profile. 2.7. Statistical analysis The statistical analysis of the data was performed using the SPSS 21.0 program. Nonparametric tests were selected since the Kolmogorov Smirnov test showed that our data were not normally distributed. Descriptive statistics were used to present frequencies. Spearman correlation was used to show the association between Epilepsy Attitude Scale and continuous variables. Mann–Whitney U test was used to compare Epilepsy Attitude Scale scores through dichotomous factors and Kruskal–Wallis test when a factor has more than two categories. 3. Results Sociodemographic and disease-related characteristics of the sample are presented in Table 1. When the patients were asked whether their life had been affected or not by the disease, 24 patients reported that they had to hide their
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K. Yeni et al. / Epilepsy & Behavior 62 (2016) 66–71
Table 1 Sociodemographic and disease-related characteristics of the patients.
Table 2 Psychosocial problems experienced by the patients because of epilepsy.
Characteristics
n
%
Problems
Age (mean, SD, range) Gender Male Female Education Primary school High school University Income High Moderate Low Having health insurance Yes No Marital status Single/divorced Married Living with someone Living with family Living alone Other Age of disease onset (mean, SD, range) Duration of epilepsy (year) (mean, SD, range) Type of seizure Focal Generalized Seizure frequency per month in the previous year No seizure Less than one More than one Home setting arrangement for preventing injury Yes No Comorbidity Yes No Use of epilepsy medication Monotherapy Polytherapy Use of medication regularly Yes No Attendance to regular follow-ups Yes No Seeking nonmedical help Yes No
31.7 ± 9.7 (18–70)
–
27 43
38.6 61.4
27 21 22
38.6 30.0 31.4
13 50 7
18.6 71.4 10.0
59 11
84.3 15.7
41 29
58.6 41.4
64 3 3 16.7 ± 10.2 (0–54) 15.1 ± 11.3 (1–63)
91.4 4.3 4.3 – –
17 53
24.3 75.7
6 27 37
8.6 38.6 52.9
5 65
7.1 92.9
Concealing the epilepsy diagnosis Yes No Problems in private life due to epilepsy No Yes Was rejected as a spouse (n = 21) Did not want to marry (n = 21) Experiencing problems in marriage (n = 21) Has a boy or girl friend but could not tell the diagnosis (n = 21) Drop out of school because of epilepsy Employment Yes No Left Problems in employment (n = 41) Because of epilepsy Other than epilepsy Having driving license Yes No Driving actively (n = 25) Yes No Reason for not driving Because of epilepsy Other than epilepsy Exemption from military service (n = 27) Yes No Change in family attitude since the epilepsy No Be overprotective Be more supportive
9 61
12.9 87.1
31 39
44.3 55.7
60 10
85.7 14.3
63 7
90.0 10.0
30 40
42.9 57.1
n
%
24 46
34.3 65.7
49 21 4 6 9 2 12
70.0 30.0 19.0 28.6 42.9 9.5 17.1
29 38 3
41.4 54.3 4.3
16 25
39.0 61.0
25 45
35.7 64.3
8 17
32.0 68.0
12 5
70.6 29.4
13 14
48.1 51.9
7 43 20
10.0 61.4 28.6
of onset, the duration of diagnosis, type and frequency of the seizures, and presence of a comorbidity (p N 0.05) (Table 5). The correlations between each scale which were used in the study were assessed (Table 6). Significant correlations were obtained between the attitude scale and the knowledge scale (p = 0.001), the quality-of-life scale (epilepsy effects subscale) (p = 0.002), the stigma scale (p = 0.026), and the HADS depression (p = 0.001). There were no correlations between the attitude scale and the HADS anxiety and the locus of control scale. 4. Discussion
disease. Twelve patients had left school or could not attend school because of epilepsy. Among the 25 patients who had driving licenses, 12 could not drive because of their disease, and half of the 27 male patients had been exempted from the compulsory military service because of epilepsy (Table 2). The mean score of the Epilepsy Attitude Scale was found to be 59.7 ± 6.62 (range: 40–70). The mean scores of the study scales are presented in Table 3. When the attitude scores were evaluated according to the sociodemographic characteristics, it was observed that attitude did not significantly correlate with the age, gender, income, and marital status. However, the attitude scores were higher in the group with high educational level compared with those in the group with lower education (p = 0.013). Furthermore, the mean scores of the patients who lived with their families/friends were higher than for those living alone (p = 0.04). The attitude of patients with protective families was significantly better than that of others (p = 0.022) (Table 4). When the attitude scores were evaluated according to the disease characteristics, they did not significantly change according to the age
Although there are numerous studies regarding attitude towards epilepsy among general populations, the number of studies carried out among patients with epilepsy regarding attitude is limited. While a study from Ethiopia reports positive attitude towards the disease [23], a study from Iran [24] reports that the percentage of the patients who stated that they should not marry an individual with epilepsy was 13%, that they should not participate in social activities was 22%, Table 3 Mean scores of the study scales. Scales
Mean ± SD
Range
Epilepsy Attitude Scale Epilepsy Knowledge Scale Stigma scale Rotter's Locus of Control Scale HADS anxiety scale HADS depression scale QOLIE-10: Epilepsy effects QOLIE-10: Mental health QOLIE-10: Role functioning
59.7 ± 6.62 12.1 ± 2.7 2.07 ± 3.01 10.5 ± 3.32 6.8 ± 3.65 6.2 ± 4.14 55.4 ± 30.7 49.0 ± 12.2 60.6 ± 28.1
40–70 2–16 0–9 2–19 0–17 0–15 0–100 23.3–70 0–100
K. Yeni et al. / Epilepsy & Behavior 62 (2016) 66–71 Table 4 Epilepsy Attitude Scale scores according to the sociodemographic characteristics.
Age Gender Female Male Education Primary school High school and more Income Good Moderate Low Marital status Single/divorced Married Living with someone Living with family/friends Living alone Change in family attitude following diagnosis No Overprotective More supportive
Mean ± SD
Median
p
–
–
0.434
60.9 ± 5.79 57.7 ± 7.46
61.0 58.0
0.087
57.6 ± 6.33 61.0 ± 6.53
59.0 62.0
0.013
62.6 ± 4.15 59.3 ± 6.56 56.5 ± 9.30
63.0 60.0 61.0
00.193
59.0 ± 6.83 60.7 ± 6.28
60.0 61.0
0.244
59.9 ± 6.62 53.6 ± 3.05
61.0 53.0
0.040
57.0 ± 3.78 61.2 ± 6.30 57.4 ± 7.33
58.0 61.0 57.0
0.022
and that they have the tendency towards violence was 25%. In a study carried out many years ago in UK, however, it was reported t hat when patients with epilepsy were compared with the healthy controls, patients demonstrated a more positive attitude towards epilepsy [25]. However, Aydemir et al.'s study [26] showed that there was no difference between the patient and control groups, and the attitude had been found to be good in both groups. As a matter of fact, it is difficult to compare these studies with each other because they used different methods, different questions, or different scales. Evaluation using a single universal scale will simplify the comparison between different studies and will eliminate incorrect conclusions. In our study, the mean score of the Epilepsy Attitude Scale was found to be 59.7 ± 6.62 (range: 40–70), which demonstrates the positive attitudes among patients. This result is comparable with results of Aydemir et al.'s [26] study which was performed in another hospital of the same university. However, the study by Degirmenci et al. [27] demonstrates that this positive attitude cannot be generalized for the Turkish population. In this study, which was carried out in a small city in Turkey, while 66.2% of the patients would not permit their children to marry an individual with epilepsy, 25.4% of the patients were against employing an individual with epilepsy. In our study, these rates were determined as 14.3% and 7.1%, respectively. In Degirmenci et al.'s [27] study, the level of education of the patients being lower than that of our study group supports the positive relationship between the educational level and the attitude. Our finding of a more positive attitude among the higher education group further supports the relation between education and attitude. Since one of the most important factors that affect the negative attitudes of patients is an incorrect belief, an Table 5 Comparison of the Epilepsy Attitude Scale scores according to the disease characteristics.
Age of onset Duration of epilepsy Type of seizure Focal Generalized Seizure frequency per month in previous year No seizure Less than one More than one Having a comorbidity Yes No
Mean ± SD
Median
p
– –
– –
0.810 0.669
58.7 ± 7.04 60.0 ± 6.51
60.0 61.0
0.528
62.5 ± 6.05 60.2 ± 7.64 58.8 ± 5.87
60.5 61.0 60.0
0.300
57.7 ± 7.29 60.0 ± 6.53
61.0 60.0
0.404
69
observation of a more positive attitude towards the disease in patients with high educational level is expected. As the level of education increases, these incorrect beliefs decrease, and thus, a positive attitude towards the disease would be predicted to develop. When the attitude scores were evaluated according to sociodemographics, a significant difference was also found for living conditions. The better attitude towards the disease observed in patients living with their families may be explained by the social support they receive from them. A negative correlation between the social support and the level of stigma has been reported in previous studies [28–31]. Naturally, the attitudes of patients with a low level of stigma would be more positive. In the present study, a negative correlation was determined between the attitude scale and the stigma scale. The positive impact of the overprotective behaviors of the families after the diagnosis onto the attitude scores is notable. It has been reported that being protective towards patients with epilepsy may decrease their autonomy and may reduce the rate of school or work attendance [32]. However, in the present study, the protective attitude of the families may be felt as social support by the patients, and this may have influenced their attitudes positively. When the attitude scores were evaluated according to the disease characteristics, they did not significantly change according to the age of onset, the duration of diagnosis, type and frequency of the seizures, and presence of a comorbidity. There are numerous studies [33] reporting the importance of some disease characteristics in stigma literature, but as far as we know, there is no such report regarding attitude. When attitude was correlated with patient knowledge, stigma, locus of control, and anxiety and depression, significant correlations were obtained between the attitude scale and the knowledge scale and the stigma scale. The mean of epilepsy knowledge score was moderate to good in our sample. The findings from an earlier study from another hospital of the same university [26] are comparable with our results. In both studies, it can be said that the level of knowledge of the patients was above the midlevel and nearly good. However, in a previous study [34] which was carried out in ten European countries including Turkey as a representative of eastern Europe, it was stated that the knowledge levels of patients regarding epilepsy in Turkey were lower than that of other countries. This situation demonstrates that there is need for educational programs directed towards patients with epilepsy in Turkey. A negative correlation between the knowledge and stigma has been reported in previous studies; stigma decreases with the increase in the level of knowledge [35–37]. In our study, a negative correlation was determined between stigma and the attitude as well. Causing psychosocial problems, stigma may impact the patient's attitude towards their own disease. Our sample, when compared with the general population, had some problems regarding employment and marriage. It was determined that 18.6% of patients with epilepsy were unemployed, and this rate was higher than the unemployment rate (11.1%) of the Turkish population [38]. This condition demonstrates that patients with epilepsy may have problems in finding jobs in our study. In addition, 30% of the patients had stated that they faced problems in their private lives, that they were not accepted as spouses, or that they did not wish to get married because of the disease. When marriage rate is compared with national data, our sample's marriage rate is lower than of the general population (41.1% vs 65%) [39]. Also, Aydemir et al. [32] have demonstrated in a study including groups with epilepsy and migraines and a healthy control group that patients with epilepsy encounter problems regarding marriage. It was observed that percentages of married people in the groups were 82.1% for the group with migraines, 73.9% for the healthy control group, and only 42.9% for the group with epilepsy. Our study, in which 41.1% of the patients were married, demonstrates a similarity to the aforementioned study. Another factor of which impact on attitude was investigated in this study was locus of control. It has been reported that a high internal locus of control in patients with epilepsy is important in
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K. Yeni et al. / Epilepsy & Behavior 62 (2016) 66–71
Table 6 Correlations between the Epilepsy Attitude Scale, Epilepsy Knowledge, stigma, Locus of Control, anxiety and depression and quality-of-life scales. Scales Attitude scale Knowledge scale Stigma scale Locus of Control HADS anxiety HADS depression QOLIE-10: epilepsy effects QOLIE-10: mental health QOLIE-10: role functioning
r p r p r p r p r p r p r p r p r p
Attitude scale
Knowledge scale
Stigma scale
Locus of Control
HADS anxiety
HADS depression
QOLIE-10: epilepsy effects
QOLIE-10: mental health
QOLIE-10: role functioning
– – 0.384 0.001 −0.267 0.026 −0.054 0.660 −0.223 0.064 −0.404 0.001 0.307 0.010 0.026 0.828 0.211 0.080
−0.215 0.074 −0.164 0.175 −0.048 0.691 −0.101 0.404 0.179 0.137 −0.146 0.227 0.043 0.725
0.094 0.441 0.283 0.018 0.282 0.018 −0.255 0.033 −0.067 0.579 −0.336 0.004
0.423 0.001 0.353 0.003 −0.220 0.068 −0.090 0.459 −0.046 0.706
0.664 0.000 −0.473 0.001 −0.373 0.001 −0.361 0.002
−0.461 0.001 −0.354 0.003 −0.338 0.004
0.275 0.021 0.565 0.001
0.335 0.005
– –
Bold values show a level of significance b 0.05.
developing a positive attitude towards the disease, and better coping and self-management [9]. However, no correlation was determined between the locus of control and the attitude in our study. This situation may be due to the structure of the scale. Although the validity and the reliability of the scale were carried out on Turkish university students, studying the validity and reliability of this scale in this special patient population may be recommended. Another factor that was negatively correlated with the attitude was depression, which is also expected. Depression has an important correlation with the feeling of stigma. A positive correlation between stigma and depression has been reported in previous studies [37,40,41]. Naturally, the level of depression would increase with an increase in stigma, and in turn, this would reflect onto the attitude. Furthermore, it should be considered that a negative correlation was determined between the anxiety level and the attitude scores in our study, although it was not significant. A positive correlation was determined between the attitude scores of the patients and epilepsy effects subscale of the QOLIE-10. Thus, it may be concluded that a positive attitude towards the disease increases the quality of life. Furthermore, when the positive correlation of the knowledge and attitude is considered, it is expected that well informed patients would have positive attitudes and this, in turn, would reflect positively onto their quality of life [10,42]. There are some limitations to this study which should be considered when results are interpreted. Although the study was performed in a metropolitan city in which one-fifth of the Turkey population reside, our small sample size makes it difficult to generalize our results. Also, this study cannot be generalized to other Turkish individuals with epilepsy who are not receiving hospital treatment. Since there is a limited number of studies on this subject, it was difficult to compare our results with literature. 5. Conclusions We conclude that the attitudes of the Turkish patients with epilepsy were moderate to good. Furthermore, it was observed that knowledge on epilepsy was an important factor for a positive attitude towards the disease. Educating patients about their disease would be effective in reducing depression and increasing the quality of life, in addition to increasing their knowledge and awareness. Source of funding None declared.
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