YEBEH-04264; No of Pages 6 Epilepsy & Behavior xxx (2015) xxx–xxx
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People with epilepsy lack knowledge about their disease R. Mameniskiene ⁎, E. Sakalauskaite-Juodeikiene, V. Budrys Clinic of Neurology and Neurosurgery Faculty of Medicine, Vilnius University, Vilnius, Lithuania Department of Neurology, Vilnius University Hospital “Santariskiu klinikos”, Vilnius, Lithuania
a r t i c l e
i n f o
Article history: Received 23 February 2015 Revised 28 February 2015 Accepted 2 March 2015 Available online xxxx Keywords: Epilepsy Knowledge Patients Educational intervention
a b s t r a c t For people with epilepsy, knowledge of their disease is an important factor in optimizing the control of their epileptic seizures. Better-informed patients can more easily participate in the treatment process, reducing disease-related anxiety and coping better with stigma. This study was developed in a Lithuanian tertiary epilepsy center to assess knowledge of disease among people with epilepsy, to estimate differences in disease knowledge between patient groups, and to evaluate how epilepsy influences patients' daily lives. We asked patients to complete a questionnaire and collected information from outpatient cards on epilepsy etiology, type of seizures, instrumental findings, and information about patients' antiepileptic drugs. Our results showed that people with epilepsy have poor knowledge about their disease: almost half of the patients did not identify the cause of their illness or their type of seizures; most did not know the results of their EEG and neuroimaging studies. Patients also lacked general knowledge about their disease and lifestyle features. However, cognitive deficits were not assessed in this study, and this may have affected the answers where patients were required to recall and name their drugs or the dosage of medication. Almost half of them believed that epilepsy had changed their lives significantly and reported anxiety and constant fear of seizures. Patients were also afraid to have children with epilepsy. There is clearly a great need for improved educational intervention for people with epilepsy. © 2015 Elsevier Inc. All rights reserved.
1. Introduction Epilepsy is one of the most common serious chronic neurological diseases, with over 50 million people having epilepsy worldwide [1]. It can affect people of all ages, with maximal rates of occurrence in children and in the older population. With increases in life expectancy, the prevalence of epilepsy is expected to increase over the next two decades. Epilepsy has devastating consequences for people's lives. Some are related to injuries and a high risk of premature death, including sudden unexpected death associated with seizures. Others relate to ignorance and prejudice about the nature of the disease, leading to stigma and discrimination within the society [2]. Epilepsy entails huge costs on individuals and on societies. In the World Health Organization (WHO) European Region alone, the annual cost of epilepsy is estimated to be EUR 20 billion [3]. The prevalence of epilepsy in Lithuania in 2013 was 6.6 (children) and 8.6 (adults) per 1000 residents [4]. The incidence of epilepsy in developed countries reaches 50 per 100,000 people per year [5,6]. Clinical research has hitherto tended to focus on seizures and effectiveness of treatment,
and much less on quality of life, nonpharmacological measures and coping mechanisms. Patients' knowledge about their disease is important in the control of seizures. High health literacy allows the patient to participate in the treatment process, to make correct decisions, to collaborate with the physician, and to share responsibility. Insufficient medical knowledge is associated with a worse clinical outcome, an increased mortality, and an increased health care expenditure [7,8]. Knowledge and understanding reduce disease-related anxiety, fear, false beliefs, and exposure to stigma [2,9]. There is evidence that low health literacy is associated with low income, lower education, and higher rates of epilepsy. Low health literacy is more frequent in racial and ethnic minorities, among people from rural areas, and among the elderly [10,11]. However, even in developed countries, people with epilepsy (PWE) lack knowledge about epilepsy, especially concerning medication and the cause of their disease [12,13]. The lack of knowledge (e.g., about seizure-provoking factors) inevitably increases the seizure frequency [14]. Better adaptation, treatment success, and other benefits can be achieved by improving the knowledge of PWE about their disease [15]. Educational interventions may also reduce potentially harmful self-management practices in PWE [16]. 2. Aims
⁎ Corresponding author at: Epilepsy Centre, Department of Neurology, Vilnius University Hospital “Santariskiu klinikos” Santariskiu str. 2, LT-08661 Vilnius, Lithuania. Tel.: +370 52365109, fax: +370 52365220. E-mail address: [email protected] (R. Mameniskiene).
Our study aimed: 1) to assess the knowledge of PWE about their disease; 2) to estimate the disease knowledge differences between the patient groups according to sex, age, education, residence, income,
http://dx.doi.org/10.1016/j.yebeh.2015.03.002 1525-5050/© 2015 Elsevier Inc. All rights reserved.
Please cite this article as: Mameniskiene R, et al, People with epilepsy lack knowledge about their disease, Epilepsy Behav (2015), http://dx.doi.org/ 10.1016/j.yebeh.2015.03.002
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marital status, epilepsy duration, and signs of anxiety and depression; and 3) to evaluate how epilepsy influences the daily lives of PWE.
Epilepsy knowledge questionnaire results are presented as frequencies and percentages of correct answers. The impact of epilepsy on the lives of PWE was analyzed descriptively and is presented as proportions.
3. Participants and methods 4. Results The cross-sectional study was performed in the Epilepsy Centre of Vilnius University Hospital Santariskiu klinikos in 2013. Two hundred and eleven Lithuanian-speaking adults diagnosed with epilepsy and who were receiving ongoing treatment were asked to complete a questionnaire encompassing their sociodemographic data, epilepsy knowledge, impact of epilepsy on daily life, and the Hospital Anxiety and Depression (HAD) scale [17]. The questionnaire was delivered shortly before they went into the consultation room. We compared this information to that recorded in their outpatient cards. We excluded patients with psychogenic nonepileptic seizures, a single epileptic seizure, or evident cognitive decline and dementia. We did not enroll PWE who did not filled out or only partly filled out the questionnaires. We obtained consent from the local ethics committee for this study. For sociodemographic data, we collected information about age, sex, education, residence, marital status, and financial monthly income. We counted those scoring 0–7 points on the HAD scale as being without signs of anxiety or depression; those with 8 or more points we counted as showing signs of anxiety or depression. We also asked patients several questions about their disease — epilepsy etiology, seizure type(s), diagnostic tests and their findings, AED name, frequency of use, and others. We asked them to choose the answer from the list of the epilepsy etiology, seizure type, and findings of diagnostic tests. Patients had to report if their EEG showed some epileptiform abnormalities and if the finding was normal or abnormal without specifying their type and localization. We also asked, “How do you intervene when your relative or friend is having a seizure?” giving several possible (true and false) answers. The patients' epilepsy knowledge questionnaire was modified from a scale used previously [18] and adapted to our patient population. It comprised several domains regarding understanding of epilepsy, diagnosis, treatment, working issues, lifestyle features, social effects of disease, and driving problems. The participant had to answer “yes” or “no” to 21 questions. The epilepsy knowledge questionnaire score was the sum of correct answers. The last part of the questionnaire was about epilepsy impact on the life of PWE, giving them multiple-choice answers. For example, we asked the question, “How has epilepsy changed your life?” suggesting possible answers such as “Epilepsy has changed my life extremely”, “I feel anxious”, “I feel depressed”, “I am afraid to have children with epilepsy”, “I have hope and rely on therapy”, and “Epilepsy is an obstacle to happiness”; and other questions giving possible “yes” or “no” answers. After patients completed the questionnaire, the researcher clarified and helped patients answer any remaining questions they were unsure about. Before distributing the questionnaire, the study team members reviewed it for simplicity, readability, and content. The questionnaire was evaluated by an epilepsy expert. We pilot tested 12 patients to eliminate questions that were difficult to comprehend.
One hundred and thirty-four out of 211 questionnaires were completed. Fifty-two were excluded because the patients were unable to understand and complete the questionnaire without assistance, a reason secondary to cognitive limitations such as mental retardation and/ or learning disabilities. Another 19 refused to complete the questionnaire. The remaining 134 patients — 54 (40.3%) men and 80 (59.7%) women of 18 years of age and older (mean age was 35.7 ± 12.3 years, from 18 to 72 years) visiting the clinic — were enrolled into the study. The mean duration of epilepsy was 15.0 ± 12.0 years (from 1 to 50 years). Sixty-six (49.3%) PWE received one AED, and 68 (50.7%) were treated with two or more AEDs. Males in this study were older, with a mean age of 38.5 ± 11.6, while females' mean age was 33.8 ± 12.6 (p = 0.028). There were no significant differences between PWE groups regarding education level, residency, and marital status, except monthly financial income: 61.9% of the males' and 80.0% of the females' income was less than 290 EUR (p = 0.039) per month. Most of the respondents were well educated — 92.9% had secondary education or higher. There were 55 (41.0%) PWE who were married or living with a partner, while 54 (40.2%) were single or divorced. Table 1 shows the sociodemographic data. According to the HAD scale, 62 (50.4%) acknowledged symptoms of anxiety, and 41 (33.3%) indicated they had symptoms of depression. Patients' knowledge about the cause of epilepsy coincided with the established etiology by our epilepsy center professionals in 74 (55.2%) patients. Incorrectly identified etiologies of epilepsy are shown in Fig. 1. The seizure type was correctly named by 58 (43.3%) of the patients. Only 4 (3.0%) patients knew the results of electroencephalography (EEG), and 27 (20.1%) knew the results of their neuroimaging studies. One hundred and eight (83.1%) patients remembered the name of their AED, and 123 (91.8%) knew the dose and frequency of drug administration. Fig. 2 shows the answers to the question “How to intervene when your relative or friend is having a seizure?”, and Fig. 3 shows patients' general knowledge about epilepsy.
Table 1 Sociodemographic data. Sociodemographic data Sex Age (years, M ± SD) Education
Residence
3.1. Statistical analysis Descriptive statistics were calculated using Microsoft Office Excel 2007 and SPSS Statistics 17.0. Sociodemographic data are presented as proportions (%). Independent t-test was used to test group score differences in the epilepsy knowledge questionnaire and was calculated based on sociodemographic variables, duration of epilepsy, and HAD scale scores for depression and anxiety. Qualitative analysis of male and female groups was assessed using Fisher's exact test, and p values b 0.05 were regarded as significant.
Employment
Income per month (EUR)
Marital status
Patients N (%) Male Female Primary school Secondary school College University Partial university Did not specify City Countryside Employed Unemployed Studying ≤290 N290 Did not specify Married Single Divorced Widowed Lives with a partner Did not specify
54 (40.3%) 80 (59.7%) 35.7 ± 12.3 3 (2.2%) 23 (17.2%) 52 (38.8%) 35 (26.1%) 15 (11.2%) 6 (4.5%) 98 (73.1%) 36 (26.9%) 30 (22.4) 79 (59.0%) 25 (18.6%) 79 (59.0%) 30 (22.4%) 25 (18.6%) 37 (27.6%) 54 (40.3%) 11 (8.2%) 4 (3.0%) 18 (13.4%) 10 (7.5%)
Please cite this article as: Mameniskiene R, et al, People with epilepsy lack knowledge about their disease, Epilepsy Behav (2015), http://dx.doi.org/ 10.1016/j.yebeh.2015.03.002
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Fig. 1. Patients’ knowledge about epilepsy etiology: incorrectly identified causes.
Table 2 shows the results of the epilepsy knowledge questionnaire. Over one-third (49 (36.6%)) of PWE stated that epilepsy is a symptom of mental illness, and 56 (41.8%) patients believed that epilepsy is a hereditary disease. Eight respondents (6.0%) thought that epilepsy is contagious. Surprisingly, as many as 42 (31.3%) PWE were sure that women with epilepsy should stop taking their medicine when they become pregnant, and 27 (33.8%) respondents who gave false answers were women. However, only 7 (8.75%) women did not answer this question, while a greater proportion of men — 19 (35.2%) — did not express their opinion. Sixty (44.8%) patients were convinced that if seizures are controlled for several months, a patient can reduce their AED dose. Statistically significant differences in epilepsy knowledge questionnaire scores were found with respect to age (scores on the epilepsy knowledge questionnaire for patients b 30 years of age were higher (medium M = 12.62, standard derivation SD = 2.91) than for the older patients (M = 11.15, SD = 3.15, p = 0.006)), education (scores were higher for patients with university or partial university education (M = 13.10, SD = 2.90) than for those with less education (M = 11.08, SD = 3.03, p = 0.0003)), urban and rural populations (patients
living in cities had higher epilepsy knowledge scores (M = 12.29, SD = 2.92) than those living in rural areas (M = 10.47, SD = 3.29, p = 0.002)), and duration of epilepsy (patients with epilepsy duration less than 10 years had epilepsy knowledge scores that were significantly higher (M = 12.88, SD = 2.91) than those with longer duration of epilepsy (M = 11.13, SD = 2.97, p = 0.001)). We did not find significant epilepsy knowledge differences as a function of sex, marital status, financial income, and HAD scale scores of PWE. See Table 3 for PWE group differences in epilepsy knowledge questionnaire. The last part of the questionnaire was devoted to epilepsy impact on patients' lives. Fifty-nine (44.0%) PWE believed that epilepsy had changed their lives significantly — 68 (50.7%) reported that they feel anxious, 45 (33.6%) anger, 61 (45.5%) constant fear of the next seizure, and 28 (20.9%) discrimination. Forty-one (30.6%) patients stated that epilepsy has a negative impact on their study and professional life, 52 (38.8%) were afraid to stay lonely, and 57 (42.5%) were afraid to have children with epilepsy. However, there were also some optimistic attitudes: 92 (68.7%) PWE stated that they have hope and rely on therapy; 67 (50.0%) patients were sure that epilepsy is not an obstacle to be happy.
Fig. 2. Patients’ knowledge about interventions during a seizure. The sum of answers is greater than 100% because some respondents chose several answers.
Please cite this article as: Mameniskiene R, et al, People with epilepsy lack knowledge about their disease, Epilepsy Behav (2015), http://dx.doi.org/ 10.1016/j.yebeh.2015.03.002
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Fig. 3. Patients’ general knowledge about epilepsy.
5. Discussion The respondents' mean age was 35.7 ± 12.3 years — the age when a person typically leads an active social and professional life, starts a family, and raises children. Fewer than half (44.4%) of the respondents lived Table 2 Epilepsy knowledge questionnaire. Statement
Correct N (%) of answer correct answers
1. People with epilepsy should avoid strenuous work because this can provoke seizures. 2. EEG can always prove the diagnosis of epilepsy. 3. People with epilepsy are as capable as other people. 4. All people with seizures should avoid working with open machinery. 5. If a patient becomes pregnant, she should discontinue the treatment with AED. 6. People with seizures should not swim without an accompanying person. 7. All people with epilepsy should avoid flashing lights (disco lights, TV, or computer screens). 8. In most cases, doctors can control epileptic seizures with medication. 9. If your seizures are controlled for some months, you can reduce the dose of AED. 10. All people with epilepsy have similar symptoms. 11. If a patient expects a seizure, he/she should take an additional dose of AED. 12. A patient can discontinue AED if he/she experiences adverse reactions of AED. 13. People with epilepsy can take an active part in sports. 14. An epileptic seizure always results in loss of consciousness. 15. All patients with epilepsy cannot drive a car. 16. Blood samples can be used to measure the concentration of AED in the body. 17. Epilepsy is a symptom of mental illness. 18. Excessive alcohol consumption or sudden cessation of drinking alcohol predispose to seizures. 19. Epilepsy is a contagious disease. 20. Sudden and severe electric discharges of cortical neurons cause epileptic seizures. 21. Epilepsy is a hereditary disease.
No
28 (20.9%)
No Yes No
33 (24.6%) 101 (75.4%) 28 (20.9%)
a
No
66 (49.3%)a
Yes
113 (84.3%)
No
50 (37.3%)
Yes
101 (75.4%)
No
68 (50.7%)
No No
71 (53.0%) 69 (51.5%)
No
104 (77.6%)
Yes No
61 (45.5%) 71 (53.0%)
No Yes
55 (41.0%) 73 (54.5%)
No Yes
76 (56.7%) 99 (73.9%)
No Yes
123 (91.8%) 105 (78.4%)
No
66 (49.2%)b
Answers of women: correct — 46 (57.5%), false — 27 (33.8%), did not respond — 7 (8,75%); answers of men: correct — 20 (37%), false — 15 (27.8%), did not respond — 19 (35.2%). b Correct answers of women — 36 (45.0%); correct answers of men — 30 (55.6%).
with a partner, and more than half (55.6 %) were single. These figures contrast with the general population in Lithuania, where 55.4% lived with a partner in 2011 [19]. The other study from our epilepsy center showed that 52.3% of PWE were single (37.7% of the respondents had never been married (47.0% were male, and 31.5% female), 8.6% were divorced, and 6% were widowed). Among single people, 43.8% identified difficulties in communicating with the opposite sex due to epilepsy, and 27.1% stated that epilepsy was the main reason for the disruption of their long-term relationship. Seventeen percent of patients (62.2% were women) concealed their epilepsy at the beginning of the relationship from their partner. Among the patients, 25.8% stated that their family life would be better without epilepsy [20]. Nearly all our patients were educated, but the income of the majority of our respondents was less than 290 EUR (minimum monthly wage) per month, mostly from allowance payment, while the average salary in Lithuania per month was 541.1 EUR in 2014 [21] (and only 21.2% in 2011 in Lithuania had a higher education) [18]. It shows that, despite a good education, it is very difficult to get a job with a diagnosis of epilepsy. One of the reasons is that stigma alone can make it more difficult for PWE to find a job: many employers are reluctant to hire a person they know has epilepsy, even if the seizures are controlled. If the employee suffers a seizure while at work, they can harm not only themselves but “can harm other employees psychologically” (cited from the comments). On the other hand, it could be that PWE are less self-confident during the job interview. We confirmed the previous data that mood disorders are common among PWE: half (62 (50.4%)) of the respondents had symptoms of anxiety, and one-third (41 (33.3%)) had features of depression. Some studies have shown that patients with epilepsy are about ten times more likely to suffer from depression compared with the general population (55% and 5%, respectively) [22]. Other studies found that 9–37% of PWE suffered from depression and 11–25% suffered from anxiety [23]. Almost half of the patients could not identify the cause of their illness and type of seizures (44.8% and 56.7%, respectively); most of the patients did not know the results of EEG and neuroimaging studies (97.0% and 79.9%, respectively), and over one-third (36.6%) believed that epilepsy is a symptom of mental illness. Fewer than half (41.8%) thought that epilepsy is a hereditary disease. We think that the insufficient health literacy of our patients can be partly explained by limited consultation times with the neurologist: an official neurologist's consultation lasts 15–20 min; discussions with the patient about diagnosis, investigation findings, treatment, and living and working restrictions are often too short and not sufficiently comprehensive. On the other hand, the information about the disease, etiology, and results of examination
Please cite this article as: Mameniskiene R, et al, People with epilepsy lack knowledge about their disease, Epilepsy Behav (2015), http://dx.doi.org/ 10.1016/j.yebeh.2015.03.002
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Table 3 Epilepsy knowledge differences between PWE groups. Patient groups Sex Age (years) Education Residence Income per month (EUR) Marital status Epilepsy duration (years) HAD scale, anxiety (scores) HAD scale, depression (scores)
Female Male ≤30 N30 University, partial university Primary, secondary school, college City Countryside ≤290 N290 Married/lives with a partner Single/divorced/widowed ≤10 N10 Normal (≤7) Anxiety (N7) Normal (≤7) Depression (N7)
Epilepsy questionnaire scores (M)
Standard deviation (SD)
Patients (N)
11.71 11.92 12.62 11.0 13.10 11.08 12.29 10.47 12.0 12.47 12.26 11.70 12.88 11.13 12.15 11.38 12.02 11.23
3.01 3.28 2.91 3.15 2.90 3.03 2.92 3.30 2.90 3.62 3.31 2.88 2.91 2.97 3.01 3.13 3.15 2.91
80 54 58 76 49 78 98 36 79 30 55 69 53 71 62 61 82 41
is usually given during the confirmation of diagnosis. The average duration of the disease among our patients was 15 years, and PWE often complain of memory and attention deficits. This could explain their inability to remember the results of EEG or MRI findings or to remember the names of their medications. Cognitive deficits were not assessed in this study, and this is one of the limitations of our study. Some patients who did not fill out the questionnaires had cognitive problems preventing them from performing or finishing the task. Therefore, if the patient found that the questionnaire was too difficult just after beginning, he stopped participation in the study. This also could be a source of sampling bias and could affect the results of this study. However, the majority of PWE in this study were well educated (compared with the general population), but health literacy was lower than what we expected. The third possible reason is the lack of reliable informational resources in the Internet written in our mother tongue. However, in a study done in the US, PWE were asked what was the best way to increase their awareness of the most important epilepsy-related topics, and most (59%) of the respondents suggested that information in doctors' offices would be the best method [9]. Previous studies indicate that PWE lack knowledge about epilepsy concerning diagnosis, treatment, adverse drug reactions, seizure control, psychological problems, social security, driving, prognosis, and lifestyle aspects [24,25]. Although about half of our patients correctly identified the cause of epilepsy (55.2%), respondents' knowledge about AED therapy was quite good: the majority of patients knew the name of their AED(s) and its dose and frequency of use (83.1% and 91.8%, respectively). Interestingly, studies performed in other countries show different results: a study of 6156 PWE conducted in ten European countries found that patients lack knowledge not only about the etiology of disease, but also about therapy [12]. The difference could be due to the fact that many of our patients were well educated. Our results showed that older patients and those with less education obtained lower scores in the epilepsy knowledge questionnaire; however, we did not find significant differences between low and higher income PWE groups, probably because most of our patients were low financial among income group. Various studies also show that low health literacy is associated with low income and lower education and that higher rates of epilepsy are experienced by people living in rural areas as well as among the elderly [10,11]. A survey of 140 patients in 2006 in the USA showed that PWE with insufficient epilepsy knowledge had more seizures, worse quality-of-life scores, and lower financial income than those with higher health literacy [26]. Our study showed significant differences in epilepsy knowledge questionnaire scores with regard to age (younger patients' epilepsy knowledge questionnaire scores were higher than the older patients’ scores), education (patients with higher education had epilepsy knowledge
p-Value p N 0.05 p = 0.0064 p = 0.0003 p = 0.0025 p N 0.05 p N 0.05 p = 0.0013 p N 0.05 p N 0.05
scores that were higher than those with lower education), urban and rural population (patients living in cities had higher epilepsy knowledge scores than those living in rural areas), and duration of epilepsy (patients with shorter epilepsy duration epilepsy knowledge scores that were higher than those who suffered from epilepsy longer). Accessibility to various information sources for the urban population is probably simpler and faster than for the rural population in our country. Younger people and those with shorter disease duration had better knowledge about epilepsy. We speculate that young people may be more motivated to learn about epilepsy and are more likely to use the Internet and social networking. Other studies have shown that PWE with lower levels of education often have insufficient knowledge about epilepsy [10,11]. Our study showed that about one-third (31.3%) of PWE felt that the pregnant woman with epilepsy should discontinue treatment with AEDs. One-third (33.8%) of the respondents' false answers belonged to women, while less than one-third (27.8%) to men. However, only 8.75% of the women did not answer this question, while most men (35.2%) did not express their opinion. Therefore, we assume that drug issues in pregnancy are more important to women with epilepsy probably because of their concern of potential risks to unborn children. We suggest that some women may have an increased frequency of seizures during pregnancy because of their unilateral termination of AEDs. A 2010 study in a Canadian tertiary center showed that some women that some knowledge about epilepsy's impact on pregnancy and that the knowledge of women regarding epilepsy was significantly related to one factor — the level of a woman's education, but not to other factors (duration of the disease, past pregnancies, polypharmacy) [27]. Women of reproductive age with epilepsy comprise a very special group of patients because of the following reasons: 1) the interaction between AEDs and contraceptives are often underestimated (the UK study found that 56% of pregnancies of women with epilepsy were unplanned, and even 24% of them occurred while using contraceptives) [28]; 2) pregnancy may lower the seizure threshold; therefore, incidence of seizures may increase [29]; and 3) many AEDs are teratogenic, but some newer AEDs appear to be less associated with major malformations [30]; therefore, the neurologist has a difficult task — to prevent damage to the fetus and seek optimal control of epileptic seizures [29]. When our study was performed, carbamazepine (CBZ) and valproic acid (VPA) were approved as the first-line AED therapy in Lithuania despite age, sex, and other patient factors. We think that this fact and the lack of information about alternative AEDs before and during pregnancy could influence women's decisions on continuing or discontinuing AED treatment. About one-third (30.6%) of PWE in this study feared that epilepsy had a negative impact on their schooling and professional life, and a great proportion of PWE were afraid to stay lonely and to have children with
Please cite this article as: Mameniskiene R, et al, People with epilepsy lack knowledge about their disease, Epilepsy Behav (2015), http://dx.doi.org/ 10.1016/j.yebeh.2015.03.002
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epilepsy (38.8% and 42.5%, respectively). These results could be compared with another study performed in Lithuania: 151 PWE were surveyed regarding family life and sexuality — almost half of the respondents (47.7%) did not have children, most of them because of unwillingness, and 14.0% because of fear of transmitting epilepsy to children; and onethird (33.3%) of the respondents stated that the public attitude towards PWE had a negative impact on their family status [20]. This study has several limitations. The sample of 134 patients provides a possibility for further research, though larger sample sizes will be needed in future studies for better analyses. The respondents were from only one geographic area, so it cannot be known if our findings are generalizable to other patient populations. Also, generalizability might be an issue as respondents were patients of a tertiary epilepsy treatment center; their knowledge and experiences may be different from other PWE. Cognitive deficits were not assessed in this study, and this may be a relevant confounding factor that could affect the respondents' answers. Furthermore, some survey instruments used in this study have not been formally validated or tested for reliability. We also did not use the Quality of Life in Epilepsy Inventory in this study in order to assess quality of life, emotional well-being, social function, attention, memory, role limitations, and its impact on patients' knowledge about their disease. 6. Conclusion This study provides valuable information on the knowledge and attitudes of PWE regarding epilepsy in Lithuania. We can conclude that a significant proportion of PWE in our sample lack knowledge about their disease. They not only have insufficient information about epilepsy as a disease, but they also do not know how to explain and name their seizures, how to deal with pregnancy, how to reduce seizure frequency, and what to do when someone has a seizure. Moreover, a high proportion of patients has symptoms of depression and anxiety. There is a great need for educational intervention for these patients. Acknowledgment The authors thank Philip Smith, MD, FRCP, for his critical review and valuable advice regarding the manuscript. Conflict of interest All three authors have no conflicts of interest. References [1] Neni SW, Latif AZA, Wong SY, Lua PI. Awareness, knowledge and attitudes towards epilepsy among rural populations in East Coast Peninsular Malaysia: a preliminary exploration. Seizure 2010;19:280–90. [2] Prinjha S, Chapple A, Herxheimer A, McPherson A. Many people with epilepsy want to know more: a qualitative study. Fam Pract 2005;22:435–41.
[3] Fostering epilepsy care in Europe [Internet]. http://www.who.int/mental_health/ neurology/epilepsy/euro_report.pdf. [4] Lithuanian Ministry of Health, Health Information Centre of Institute of Hygiene [Internet]. http://sic.hi.lt/data/la2013.pdf. [5] Duncan J, Sander J, Sisodiya S, Walker M. Adult epilepsy. Lancet 2006;367:1087–100. [6] Forsgren L, Beghi E, Oun A, Sillanpaa M. The epidemiology of epilepsy in Europe — a systematic review. Eur J Neurol 2005;12(4):245–53. [7] Johnston MV, Diab ME, Kim SS, Kirshblum S. Health literacy, morbidity and quality of life among individuals with spinal cord injury. J Spinal Cord Med 2005;28(3): 230–40. [8] Howard DH, Gazmararian J, Parker RM. The impact of low health literacy on the medical costs of Medicare managed care enrollees. Am J Med 2005;118:371–7. [9] Paschal AM, Hawley SR, Romain TS, Liow K, Molgaard CA, Sly J, et al. Epilepsy patients' perceptions about stigma, education, and awareness: preliminary responses based on community participatory approach. Epilepsy Behav 2007;11:329–37. [10] Sudore RL, Mehta KM, Simonsick EM, Harris TB, Newman AB, Satterfield S, et al. Limited access in older people and disparities in health and healthcare access. J Am Geriatr Soc 2006;54:770–6. [11] Sudore RL, Yaffe K, Satterfield S, Harris TB, Mehta KM, Simonsick EM, et al. Limited literacy and mortality in the elderly. J Gen Intern Med 2006;21:806–12. [12] Doughty J, Baker G, Jacoby A, Lavaud V. Cross-cultural differences in levels of knowledge about epilepsy. Epilepsia 2003;44:115–23. [13] Long L, Reeves AL, Moore JL, Roach J, Pickering CT. An assessment on epilepsy patients' knowledge on their disorder. Epilepsia 2000;41(6):727–31. [14] Coker MF, Bhargava S, Fitzgerald M, Doherty CP. What do people with epilepsy know about their condition? Evaluation of a subspeciality clinic population. Seizure 2011;20:55–9. [15] Degirmenci Y, Karaman HIO, Bakar C. Perceptions of epilepsy of three different groups in Turkey. Epilepsy Behav 2010;19:315–22. [16] Sunmonu TA, Afolabi OT, Komolafe MA, Ogunrin AO. Patients' knowledge about their disorder: perspective of patients with epilepsy in a tertiary health facility in southwestern Nigeria. Epilepsy Behav 2011;20:556–60. [17] Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand 1983;67(6):361–70. [18] Goldstein LH, Minchin L, Stubbs P, Fenwick PB. Are what people know about their epilepsy and what they want from an epilepsy service related? Seizure 1997;6: 435–42. [19] Results of the 2011 Population and Housing Census of the Republic of Lithuania [Internet]. http://statistics.bookdesign.lt/. [20] Guk J, Mameniskiene R. Impact of epilepsy on family life. Neurol Semin 2012; 16(53):218–23. [21] Republic of Lithuania Ministry of Social Security and Labour [Internet]. http://www. socmin.lt/lt/socialinestatistika.html. [22] Cavanna AE, Cavanna S, Bertero L, Robertson MM. Depression in women with epilepsy: clinical and neurobiological aspects. Funct Neurol 2009;24(2):83–7. [23] Kwon OY, Park SP. Depression and anxiety in people with epilepsy. J Clin Neurol 2014;10(3):175–88. [24] Dawkins J, Crawford P, Stammers T. Epilepsy: a general practice study of knowledge and attitudes among sufferers and non-sufferers. Br J Gen Pract 1993;43:453–7. [25] Coulridge L, Kendall S, March A. A systematic overview—a decade of research. The information and counselling needs of people with epilepsy. Seizure 2001;10: 605–14. [26] Bautista RED, Glen ET, Shetty NK, Wludyka P. The association between health literacy and outcomes of care among epilepsy patients. Seizure 2009;18:400–4. [27] Metcalfe A, Roberts JI, Abdulla F, Wiebe S, Hanson A, Federico P, et al. Patient knowledge about issues related to pregnancy in epilepsy: a cross-sectional study. Epilepsy Behav 2012;24:65–9. [28] Fairgrieve SD, Jackson M, Jonas P, Walshaw D, White K, Montgomery TL, et al. Population based, prospective study of the care of women with epilepsy in pregnancy. BMJ 2000;321(7262):674–5. [29] Panayiotopoulos CP. A clinical guide to epileptic syndromes and their treatment. Springer Healthcare Ltd.; 2010. [30] Molgaard-Nielsen D, Hviid A. Newer-generation antiepileptic drugs and the risk of major birth defects. JAMA 2011;305(19):1996–2002.
Please cite this article as: Mameniskiene R, et al, People with epilepsy lack knowledge about their disease, Epilepsy Behav (2015), http://dx.doi.org/ 10.1016/j.yebeh.2015.03.002
Contents lists available at ScienceDirect
Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
People with epilepsy lack knowledge about their disease R. Mameniskiene ⁎, E. Sakalauskaite-Juodeikiene, V. Budrys Clinic of Neurology and Neurosurgery Faculty of Medicine, Vilnius University, Vilnius, Lithuania Department of Neurology, Vilnius University Hospital “Santariskiu klinikos”, Vilnius, Lithuania
a r t i c l e
i n f o
Article history: Received 23 February 2015 Revised 28 February 2015 Accepted 2 March 2015 Available online xxxx Keywords: Epilepsy Knowledge Patients Educational intervention
a b s t r a c t For people with epilepsy, knowledge of their disease is an important factor in optimizing the control of their epileptic seizures. Better-informed patients can more easily participate in the treatment process, reducing disease-related anxiety and coping better with stigma. This study was developed in a Lithuanian tertiary epilepsy center to assess knowledge of disease among people with epilepsy, to estimate differences in disease knowledge between patient groups, and to evaluate how epilepsy influences patients' daily lives. We asked patients to complete a questionnaire and collected information from outpatient cards on epilepsy etiology, type of seizures, instrumental findings, and information about patients' antiepileptic drugs. Our results showed that people with epilepsy have poor knowledge about their disease: almost half of the patients did not identify the cause of their illness or their type of seizures; most did not know the results of their EEG and neuroimaging studies. Patients also lacked general knowledge about their disease and lifestyle features. However, cognitive deficits were not assessed in this study, and this may have affected the answers where patients were required to recall and name their drugs or the dosage of medication. Almost half of them believed that epilepsy had changed their lives significantly and reported anxiety and constant fear of seizures. Patients were also afraid to have children with epilepsy. There is clearly a great need for improved educational intervention for people with epilepsy. © 2015 Elsevier Inc. All rights reserved.
1. Introduction Epilepsy is one of the most common serious chronic neurological diseases, with over 50 million people having epilepsy worldwide [1]. It can affect people of all ages, with maximal rates of occurrence in children and in the older population. With increases in life expectancy, the prevalence of epilepsy is expected to increase over the next two decades. Epilepsy has devastating consequences for people's lives. Some are related to injuries and a high risk of premature death, including sudden unexpected death associated with seizures. Others relate to ignorance and prejudice about the nature of the disease, leading to stigma and discrimination within the society [2]. Epilepsy entails huge costs on individuals and on societies. In the World Health Organization (WHO) European Region alone, the annual cost of epilepsy is estimated to be EUR 20 billion [3]. The prevalence of epilepsy in Lithuania in 2013 was 6.6 (children) and 8.6 (adults) per 1000 residents [4]. The incidence of epilepsy in developed countries reaches 50 per 100,000 people per year [5,6]. Clinical research has hitherto tended to focus on seizures and effectiveness of treatment,
and much less on quality of life, nonpharmacological measures and coping mechanisms. Patients' knowledge about their disease is important in the control of seizures. High health literacy allows the patient to participate in the treatment process, to make correct decisions, to collaborate with the physician, and to share responsibility. Insufficient medical knowledge is associated with a worse clinical outcome, an increased mortality, and an increased health care expenditure [7,8]. Knowledge and understanding reduce disease-related anxiety, fear, false beliefs, and exposure to stigma [2,9]. There is evidence that low health literacy is associated with low income, lower education, and higher rates of epilepsy. Low health literacy is more frequent in racial and ethnic minorities, among people from rural areas, and among the elderly [10,11]. However, even in developed countries, people with epilepsy (PWE) lack knowledge about epilepsy, especially concerning medication and the cause of their disease [12,13]. The lack of knowledge (e.g., about seizure-provoking factors) inevitably increases the seizure frequency [14]. Better adaptation, treatment success, and other benefits can be achieved by improving the knowledge of PWE about their disease [15]. Educational interventions may also reduce potentially harmful self-management practices in PWE [16]. 2. Aims
⁎ Corresponding author at: Epilepsy Centre, Department of Neurology, Vilnius University Hospital “Santariskiu klinikos” Santariskiu str. 2, LT-08661 Vilnius, Lithuania. Tel.: +370 52365109, fax: +370 52365220. E-mail address: [email protected] (R. Mameniskiene).
Our study aimed: 1) to assess the knowledge of PWE about their disease; 2) to estimate the disease knowledge differences between the patient groups according to sex, age, education, residence, income,
http://dx.doi.org/10.1016/j.yebeh.2015.03.002 1525-5050/© 2015 Elsevier Inc. All rights reserved.
Please cite this article as: Mameniskiene R, et al, People with epilepsy lack knowledge about their disease, Epilepsy Behav (2015), http://dx.doi.org/ 10.1016/j.yebeh.2015.03.002
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marital status, epilepsy duration, and signs of anxiety and depression; and 3) to evaluate how epilepsy influences the daily lives of PWE.
Epilepsy knowledge questionnaire results are presented as frequencies and percentages of correct answers. The impact of epilepsy on the lives of PWE was analyzed descriptively and is presented as proportions.
3. Participants and methods 4. Results The cross-sectional study was performed in the Epilepsy Centre of Vilnius University Hospital Santariskiu klinikos in 2013. Two hundred and eleven Lithuanian-speaking adults diagnosed with epilepsy and who were receiving ongoing treatment were asked to complete a questionnaire encompassing their sociodemographic data, epilepsy knowledge, impact of epilepsy on daily life, and the Hospital Anxiety and Depression (HAD) scale [17]. The questionnaire was delivered shortly before they went into the consultation room. We compared this information to that recorded in their outpatient cards. We excluded patients with psychogenic nonepileptic seizures, a single epileptic seizure, or evident cognitive decline and dementia. We did not enroll PWE who did not filled out or only partly filled out the questionnaires. We obtained consent from the local ethics committee for this study. For sociodemographic data, we collected information about age, sex, education, residence, marital status, and financial monthly income. We counted those scoring 0–7 points on the HAD scale as being without signs of anxiety or depression; those with 8 or more points we counted as showing signs of anxiety or depression. We also asked patients several questions about their disease — epilepsy etiology, seizure type(s), diagnostic tests and their findings, AED name, frequency of use, and others. We asked them to choose the answer from the list of the epilepsy etiology, seizure type, and findings of diagnostic tests. Patients had to report if their EEG showed some epileptiform abnormalities and if the finding was normal or abnormal without specifying their type and localization. We also asked, “How do you intervene when your relative or friend is having a seizure?” giving several possible (true and false) answers. The patients' epilepsy knowledge questionnaire was modified from a scale used previously [18] and adapted to our patient population. It comprised several domains regarding understanding of epilepsy, diagnosis, treatment, working issues, lifestyle features, social effects of disease, and driving problems. The participant had to answer “yes” or “no” to 21 questions. The epilepsy knowledge questionnaire score was the sum of correct answers. The last part of the questionnaire was about epilepsy impact on the life of PWE, giving them multiple-choice answers. For example, we asked the question, “How has epilepsy changed your life?” suggesting possible answers such as “Epilepsy has changed my life extremely”, “I feel anxious”, “I feel depressed”, “I am afraid to have children with epilepsy”, “I have hope and rely on therapy”, and “Epilepsy is an obstacle to happiness”; and other questions giving possible “yes” or “no” answers. After patients completed the questionnaire, the researcher clarified and helped patients answer any remaining questions they were unsure about. Before distributing the questionnaire, the study team members reviewed it for simplicity, readability, and content. The questionnaire was evaluated by an epilepsy expert. We pilot tested 12 patients to eliminate questions that were difficult to comprehend.
One hundred and thirty-four out of 211 questionnaires were completed. Fifty-two were excluded because the patients were unable to understand and complete the questionnaire without assistance, a reason secondary to cognitive limitations such as mental retardation and/ or learning disabilities. Another 19 refused to complete the questionnaire. The remaining 134 patients — 54 (40.3%) men and 80 (59.7%) women of 18 years of age and older (mean age was 35.7 ± 12.3 years, from 18 to 72 years) visiting the clinic — were enrolled into the study. The mean duration of epilepsy was 15.0 ± 12.0 years (from 1 to 50 years). Sixty-six (49.3%) PWE received one AED, and 68 (50.7%) were treated with two or more AEDs. Males in this study were older, with a mean age of 38.5 ± 11.6, while females' mean age was 33.8 ± 12.6 (p = 0.028). There were no significant differences between PWE groups regarding education level, residency, and marital status, except monthly financial income: 61.9% of the males' and 80.0% of the females' income was less than 290 EUR (p = 0.039) per month. Most of the respondents were well educated — 92.9% had secondary education or higher. There were 55 (41.0%) PWE who were married or living with a partner, while 54 (40.2%) were single or divorced. Table 1 shows the sociodemographic data. According to the HAD scale, 62 (50.4%) acknowledged symptoms of anxiety, and 41 (33.3%) indicated they had symptoms of depression. Patients' knowledge about the cause of epilepsy coincided with the established etiology by our epilepsy center professionals in 74 (55.2%) patients. Incorrectly identified etiologies of epilepsy are shown in Fig. 1. The seizure type was correctly named by 58 (43.3%) of the patients. Only 4 (3.0%) patients knew the results of electroencephalography (EEG), and 27 (20.1%) knew the results of their neuroimaging studies. One hundred and eight (83.1%) patients remembered the name of their AED, and 123 (91.8%) knew the dose and frequency of drug administration. Fig. 2 shows the answers to the question “How to intervene when your relative or friend is having a seizure?”, and Fig. 3 shows patients' general knowledge about epilepsy.
Table 1 Sociodemographic data. Sociodemographic data Sex Age (years, M ± SD) Education
Residence
3.1. Statistical analysis Descriptive statistics were calculated using Microsoft Office Excel 2007 and SPSS Statistics 17.0. Sociodemographic data are presented as proportions (%). Independent t-test was used to test group score differences in the epilepsy knowledge questionnaire and was calculated based on sociodemographic variables, duration of epilepsy, and HAD scale scores for depression and anxiety. Qualitative analysis of male and female groups was assessed using Fisher's exact test, and p values b 0.05 were regarded as significant.
Employment
Income per month (EUR)
Marital status
Patients N (%) Male Female Primary school Secondary school College University Partial university Did not specify City Countryside Employed Unemployed Studying ≤290 N290 Did not specify Married Single Divorced Widowed Lives with a partner Did not specify
54 (40.3%) 80 (59.7%) 35.7 ± 12.3 3 (2.2%) 23 (17.2%) 52 (38.8%) 35 (26.1%) 15 (11.2%) 6 (4.5%) 98 (73.1%) 36 (26.9%) 30 (22.4) 79 (59.0%) 25 (18.6%) 79 (59.0%) 30 (22.4%) 25 (18.6%) 37 (27.6%) 54 (40.3%) 11 (8.2%) 4 (3.0%) 18 (13.4%) 10 (7.5%)
Please cite this article as: Mameniskiene R, et al, People with epilepsy lack knowledge about their disease, Epilepsy Behav (2015), http://dx.doi.org/ 10.1016/j.yebeh.2015.03.002
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Fig. 1. Patients’ knowledge about epilepsy etiology: incorrectly identified causes.
Table 2 shows the results of the epilepsy knowledge questionnaire. Over one-third (49 (36.6%)) of PWE stated that epilepsy is a symptom of mental illness, and 56 (41.8%) patients believed that epilepsy is a hereditary disease. Eight respondents (6.0%) thought that epilepsy is contagious. Surprisingly, as many as 42 (31.3%) PWE were sure that women with epilepsy should stop taking their medicine when they become pregnant, and 27 (33.8%) respondents who gave false answers were women. However, only 7 (8.75%) women did not answer this question, while a greater proportion of men — 19 (35.2%) — did not express their opinion. Sixty (44.8%) patients were convinced that if seizures are controlled for several months, a patient can reduce their AED dose. Statistically significant differences in epilepsy knowledge questionnaire scores were found with respect to age (scores on the epilepsy knowledge questionnaire for patients b 30 years of age were higher (medium M = 12.62, standard derivation SD = 2.91) than for the older patients (M = 11.15, SD = 3.15, p = 0.006)), education (scores were higher for patients with university or partial university education (M = 13.10, SD = 2.90) than for those with less education (M = 11.08, SD = 3.03, p = 0.0003)), urban and rural populations (patients
living in cities had higher epilepsy knowledge scores (M = 12.29, SD = 2.92) than those living in rural areas (M = 10.47, SD = 3.29, p = 0.002)), and duration of epilepsy (patients with epilepsy duration less than 10 years had epilepsy knowledge scores that were significantly higher (M = 12.88, SD = 2.91) than those with longer duration of epilepsy (M = 11.13, SD = 2.97, p = 0.001)). We did not find significant epilepsy knowledge differences as a function of sex, marital status, financial income, and HAD scale scores of PWE. See Table 3 for PWE group differences in epilepsy knowledge questionnaire. The last part of the questionnaire was devoted to epilepsy impact on patients' lives. Fifty-nine (44.0%) PWE believed that epilepsy had changed their lives significantly — 68 (50.7%) reported that they feel anxious, 45 (33.6%) anger, 61 (45.5%) constant fear of the next seizure, and 28 (20.9%) discrimination. Forty-one (30.6%) patients stated that epilepsy has a negative impact on their study and professional life, 52 (38.8%) were afraid to stay lonely, and 57 (42.5%) were afraid to have children with epilepsy. However, there were also some optimistic attitudes: 92 (68.7%) PWE stated that they have hope and rely on therapy; 67 (50.0%) patients were sure that epilepsy is not an obstacle to be happy.
Fig. 2. Patients’ knowledge about interventions during a seizure. The sum of answers is greater than 100% because some respondents chose several answers.
Please cite this article as: Mameniskiene R, et al, People with epilepsy lack knowledge about their disease, Epilepsy Behav (2015), http://dx.doi.org/ 10.1016/j.yebeh.2015.03.002
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Fig. 3. Patients’ general knowledge about epilepsy.
5. Discussion The respondents' mean age was 35.7 ± 12.3 years — the age when a person typically leads an active social and professional life, starts a family, and raises children. Fewer than half (44.4%) of the respondents lived Table 2 Epilepsy knowledge questionnaire. Statement
Correct N (%) of answer correct answers
1. People with epilepsy should avoid strenuous work because this can provoke seizures. 2. EEG can always prove the diagnosis of epilepsy. 3. People with epilepsy are as capable as other people. 4. All people with seizures should avoid working with open machinery. 5. If a patient becomes pregnant, she should discontinue the treatment with AED. 6. People with seizures should not swim without an accompanying person. 7. All people with epilepsy should avoid flashing lights (disco lights, TV, or computer screens). 8. In most cases, doctors can control epileptic seizures with medication. 9. If your seizures are controlled for some months, you can reduce the dose of AED. 10. All people with epilepsy have similar symptoms. 11. If a patient expects a seizure, he/she should take an additional dose of AED. 12. A patient can discontinue AED if he/she experiences adverse reactions of AED. 13. People with epilepsy can take an active part in sports. 14. An epileptic seizure always results in loss of consciousness. 15. All patients with epilepsy cannot drive a car. 16. Blood samples can be used to measure the concentration of AED in the body. 17. Epilepsy is a symptom of mental illness. 18. Excessive alcohol consumption or sudden cessation of drinking alcohol predispose to seizures. 19. Epilepsy is a contagious disease. 20. Sudden and severe electric discharges of cortical neurons cause epileptic seizures. 21. Epilepsy is a hereditary disease.
No
28 (20.9%)
No Yes No
33 (24.6%) 101 (75.4%) 28 (20.9%)
a
No
66 (49.3%)a
Yes
113 (84.3%)
No
50 (37.3%)
Yes
101 (75.4%)
No
68 (50.7%)
No No
71 (53.0%) 69 (51.5%)
No
104 (77.6%)
Yes No
61 (45.5%) 71 (53.0%)
No Yes
55 (41.0%) 73 (54.5%)
No Yes
76 (56.7%) 99 (73.9%)
No Yes
123 (91.8%) 105 (78.4%)
No
66 (49.2%)b
Answers of women: correct — 46 (57.5%), false — 27 (33.8%), did not respond — 7 (8,75%); answers of men: correct — 20 (37%), false — 15 (27.8%), did not respond — 19 (35.2%). b Correct answers of women — 36 (45.0%); correct answers of men — 30 (55.6%).
with a partner, and more than half (55.6 %) were single. These figures contrast with the general population in Lithuania, where 55.4% lived with a partner in 2011 [19]. The other study from our epilepsy center showed that 52.3% of PWE were single (37.7% of the respondents had never been married (47.0% were male, and 31.5% female), 8.6% were divorced, and 6% were widowed). Among single people, 43.8% identified difficulties in communicating with the opposite sex due to epilepsy, and 27.1% stated that epilepsy was the main reason for the disruption of their long-term relationship. Seventeen percent of patients (62.2% were women) concealed their epilepsy at the beginning of the relationship from their partner. Among the patients, 25.8% stated that their family life would be better without epilepsy [20]. Nearly all our patients were educated, but the income of the majority of our respondents was less than 290 EUR (minimum monthly wage) per month, mostly from allowance payment, while the average salary in Lithuania per month was 541.1 EUR in 2014 [21] (and only 21.2% in 2011 in Lithuania had a higher education) [18]. It shows that, despite a good education, it is very difficult to get a job with a diagnosis of epilepsy. One of the reasons is that stigma alone can make it more difficult for PWE to find a job: many employers are reluctant to hire a person they know has epilepsy, even if the seizures are controlled. If the employee suffers a seizure while at work, they can harm not only themselves but “can harm other employees psychologically” (cited from the comments). On the other hand, it could be that PWE are less self-confident during the job interview. We confirmed the previous data that mood disorders are common among PWE: half (62 (50.4%)) of the respondents had symptoms of anxiety, and one-third (41 (33.3%)) had features of depression. Some studies have shown that patients with epilepsy are about ten times more likely to suffer from depression compared with the general population (55% and 5%, respectively) [22]. Other studies found that 9–37% of PWE suffered from depression and 11–25% suffered from anxiety [23]. Almost half of the patients could not identify the cause of their illness and type of seizures (44.8% and 56.7%, respectively); most of the patients did not know the results of EEG and neuroimaging studies (97.0% and 79.9%, respectively), and over one-third (36.6%) believed that epilepsy is a symptom of mental illness. Fewer than half (41.8%) thought that epilepsy is a hereditary disease. We think that the insufficient health literacy of our patients can be partly explained by limited consultation times with the neurologist: an official neurologist's consultation lasts 15–20 min; discussions with the patient about diagnosis, investigation findings, treatment, and living and working restrictions are often too short and not sufficiently comprehensive. On the other hand, the information about the disease, etiology, and results of examination
Please cite this article as: Mameniskiene R, et al, People with epilepsy lack knowledge about their disease, Epilepsy Behav (2015), http://dx.doi.org/ 10.1016/j.yebeh.2015.03.002
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Table 3 Epilepsy knowledge differences between PWE groups. Patient groups Sex Age (years) Education Residence Income per month (EUR) Marital status Epilepsy duration (years) HAD scale, anxiety (scores) HAD scale, depression (scores)
Female Male ≤30 N30 University, partial university Primary, secondary school, college City Countryside ≤290 N290 Married/lives with a partner Single/divorced/widowed ≤10 N10 Normal (≤7) Anxiety (N7) Normal (≤7) Depression (N7)
Epilepsy questionnaire scores (M)
Standard deviation (SD)
Patients (N)
11.71 11.92 12.62 11.0 13.10 11.08 12.29 10.47 12.0 12.47 12.26 11.70 12.88 11.13 12.15 11.38 12.02 11.23
3.01 3.28 2.91 3.15 2.90 3.03 2.92 3.30 2.90 3.62 3.31 2.88 2.91 2.97 3.01 3.13 3.15 2.91
80 54 58 76 49 78 98 36 79 30 55 69 53 71 62 61 82 41
is usually given during the confirmation of diagnosis. The average duration of the disease among our patients was 15 years, and PWE often complain of memory and attention deficits. This could explain their inability to remember the results of EEG or MRI findings or to remember the names of their medications. Cognitive deficits were not assessed in this study, and this is one of the limitations of our study. Some patients who did not fill out the questionnaires had cognitive problems preventing them from performing or finishing the task. Therefore, if the patient found that the questionnaire was too difficult just after beginning, he stopped participation in the study. This also could be a source of sampling bias and could affect the results of this study. However, the majority of PWE in this study were well educated (compared with the general population), but health literacy was lower than what we expected. The third possible reason is the lack of reliable informational resources in the Internet written in our mother tongue. However, in a study done in the US, PWE were asked what was the best way to increase their awareness of the most important epilepsy-related topics, and most (59%) of the respondents suggested that information in doctors' offices would be the best method [9]. Previous studies indicate that PWE lack knowledge about epilepsy concerning diagnosis, treatment, adverse drug reactions, seizure control, psychological problems, social security, driving, prognosis, and lifestyle aspects [24,25]. Although about half of our patients correctly identified the cause of epilepsy (55.2%), respondents' knowledge about AED therapy was quite good: the majority of patients knew the name of their AED(s) and its dose and frequency of use (83.1% and 91.8%, respectively). Interestingly, studies performed in other countries show different results: a study of 6156 PWE conducted in ten European countries found that patients lack knowledge not only about the etiology of disease, but also about therapy [12]. The difference could be due to the fact that many of our patients were well educated. Our results showed that older patients and those with less education obtained lower scores in the epilepsy knowledge questionnaire; however, we did not find significant differences between low and higher income PWE groups, probably because most of our patients were low financial among income group. Various studies also show that low health literacy is associated with low income and lower education and that higher rates of epilepsy are experienced by people living in rural areas as well as among the elderly [10,11]. A survey of 140 patients in 2006 in the USA showed that PWE with insufficient epilepsy knowledge had more seizures, worse quality-of-life scores, and lower financial income than those with higher health literacy [26]. Our study showed significant differences in epilepsy knowledge questionnaire scores with regard to age (younger patients' epilepsy knowledge questionnaire scores were higher than the older patients’ scores), education (patients with higher education had epilepsy knowledge
p-Value p N 0.05 p = 0.0064 p = 0.0003 p = 0.0025 p N 0.05 p N 0.05 p = 0.0013 p N 0.05 p N 0.05
scores that were higher than those with lower education), urban and rural population (patients living in cities had higher epilepsy knowledge scores than those living in rural areas), and duration of epilepsy (patients with shorter epilepsy duration epilepsy knowledge scores that were higher than those who suffered from epilepsy longer). Accessibility to various information sources for the urban population is probably simpler and faster than for the rural population in our country. Younger people and those with shorter disease duration had better knowledge about epilepsy. We speculate that young people may be more motivated to learn about epilepsy and are more likely to use the Internet and social networking. Other studies have shown that PWE with lower levels of education often have insufficient knowledge about epilepsy [10,11]. Our study showed that about one-third (31.3%) of PWE felt that the pregnant woman with epilepsy should discontinue treatment with AEDs. One-third (33.8%) of the respondents' false answers belonged to women, while less than one-third (27.8%) to men. However, only 8.75% of the women did not answer this question, while most men (35.2%) did not express their opinion. Therefore, we assume that drug issues in pregnancy are more important to women with epilepsy probably because of their concern of potential risks to unborn children. We suggest that some women may have an increased frequency of seizures during pregnancy because of their unilateral termination of AEDs. A 2010 study in a Canadian tertiary center showed that some women that some knowledge about epilepsy's impact on pregnancy and that the knowledge of women regarding epilepsy was significantly related to one factor — the level of a woman's education, but not to other factors (duration of the disease, past pregnancies, polypharmacy) [27]. Women of reproductive age with epilepsy comprise a very special group of patients because of the following reasons: 1) the interaction between AEDs and contraceptives are often underestimated (the UK study found that 56% of pregnancies of women with epilepsy were unplanned, and even 24% of them occurred while using contraceptives) [28]; 2) pregnancy may lower the seizure threshold; therefore, incidence of seizures may increase [29]; and 3) many AEDs are teratogenic, but some newer AEDs appear to be less associated with major malformations [30]; therefore, the neurologist has a difficult task — to prevent damage to the fetus and seek optimal control of epileptic seizures [29]. When our study was performed, carbamazepine (CBZ) and valproic acid (VPA) were approved as the first-line AED therapy in Lithuania despite age, sex, and other patient factors. We think that this fact and the lack of information about alternative AEDs before and during pregnancy could influence women's decisions on continuing or discontinuing AED treatment. About one-third (30.6%) of PWE in this study feared that epilepsy had a negative impact on their schooling and professional life, and a great proportion of PWE were afraid to stay lonely and to have children with
Please cite this article as: Mameniskiene R, et al, People with epilepsy lack knowledge about their disease, Epilepsy Behav (2015), http://dx.doi.org/ 10.1016/j.yebeh.2015.03.002
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epilepsy (38.8% and 42.5%, respectively). These results could be compared with another study performed in Lithuania: 151 PWE were surveyed regarding family life and sexuality — almost half of the respondents (47.7%) did not have children, most of them because of unwillingness, and 14.0% because of fear of transmitting epilepsy to children; and onethird (33.3%) of the respondents stated that the public attitude towards PWE had a negative impact on their family status [20]. This study has several limitations. The sample of 134 patients provides a possibility for further research, though larger sample sizes will be needed in future studies for better analyses. The respondents were from only one geographic area, so it cannot be known if our findings are generalizable to other patient populations. Also, generalizability might be an issue as respondents were patients of a tertiary epilepsy treatment center; their knowledge and experiences may be different from other PWE. Cognitive deficits were not assessed in this study, and this may be a relevant confounding factor that could affect the respondents' answers. Furthermore, some survey instruments used in this study have not been formally validated or tested for reliability. We also did not use the Quality of Life in Epilepsy Inventory in this study in order to assess quality of life, emotional well-being, social function, attention, memory, role limitations, and its impact on patients' knowledge about their disease. 6. Conclusion This study provides valuable information on the knowledge and attitudes of PWE regarding epilepsy in Lithuania. We can conclude that a significant proportion of PWE in our sample lack knowledge about their disease. They not only have insufficient information about epilepsy as a disease, but they also do not know how to explain and name their seizures, how to deal with pregnancy, how to reduce seizure frequency, and what to do when someone has a seizure. Moreover, a high proportion of patients has symptoms of depression and anxiety. There is a great need for educational intervention for these patients. Acknowledgment The authors thank Philip Smith, MD, FRCP, for his critical review and valuable advice regarding the manuscript. Conflict of interest All three authors have no conflicts of interest. References [1] Neni SW, Latif AZA, Wong SY, Lua PI. Awareness, knowledge and attitudes towards epilepsy among rural populations in East Coast Peninsular Malaysia: a preliminary exploration. Seizure 2010;19:280–90. [2] Prinjha S, Chapple A, Herxheimer A, McPherson A. Many people with epilepsy want to know more: a qualitative study. Fam Pract 2005;22:435–41.
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