Knowledge and attitudes toward epilepsy ... - Epilepsy & Behavior

Epilepsy & Behavior 22 (2011) 285–292

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Epilepsy & Behavior j o u r n a l h o m e p a g e : w w w. e l s ev i e r. c o m / l o c a t e / ye b e h

Knowledge and attitudes toward epilepsy among primary and secondary schoolteachers in Italy Oriano Mecarelli a, Giuseppe Capovilla b, Antonino Romeo c, Guido Rubboli d, Paolo Tinuper e, Ettore Beghi f,⁎ a

Department of Neurology and Psychiatry, Sapienza University, Policlinico Umberto 1° Hospital, Rome, Italy Child Neuropsychiatry Department, Epilepsy Center “C. Poma Hospital,” Mantova, Italy Department of Neurosciences, Epilepsy Center Fatebenefratelli ed Oftalmico Hospital, Milan, Italy d Department of Neurosciences, Neurology Unit Bellaria Hospital, Bologna, Italy e Department of Neurological Sciences, University of Bologna, Bologna, Italy f Laboratory of Neurological Disorders, Istituto di Ricerche Farmacologiche “Mario Negri,” Milan, Italy b c

a r t i c l e

i n f o

Article history: Received 2 May 2011 Accepted 13 June 2011 Available online 26 July 2011 Keywords: Epilepsy Knowledge Attitudes Teachers Italy

a b s t r a c t A nationwide telephone interview was conducted on a random sample of Italian schoolteachers (300 from primary and 300 from secondary schools) to ascertain knowledge and attitudes about epilepsy. Included were 516 women and 84 men aged 22 to 70 years. Thirty-seven percent of the teachers believed epilepsy starts only in childhood, 55% considered it hereditary, 46.8% declared it incurable, and only 10.5% knew surgery is a therapeutic option. Thirty-three percent considered epilepsy a moderate-to-strong limitation for marriage, 24.6% for having children, 39.7% for regular employment, and 32.8% for sports and leisure activities. Among the teachers, 66.4% declared they were unable to manage a seizing child, 24.7% were convinced that epilepsy impairs learning, 26.0% believed that it carries mental/behavioral alterations, and 36.4% thought it requires support at school. Differences in knowledge and attitudes were predicted by teachers’ age and area of residency. There were no major differences between teachers and the Italian population in their knowledge and attitudes. © 2011 Elsevier Inc. All rights reserved.

1. Introduction Epilepsy is one of the most common diseases encountered among schoolchildren; however, the disease still carries a social stigma that may result in parental reluctance to share information with teachers [1–6]. On the other hand, children with epilepsy experience significantly greater difficulties in learning and behavior than the general population because of the disease itself and the negative effects of antiepileptic drugs (AEDs) and psychosocial factors [6–8]. Teachers, in general, do not receive any formal education on a wide variety of significant medical disorders, particularly epilepsy. As much as 40% of a child's waking life is spent at school, and during that time teachers have an important role in the management and surveillance of children with epilepsy. For this reason, educational campaigns about epilepsy among teachers are very important. Surveys conducted mostly in developing countries [1,9–28] show that many teachers are aware of epilepsy in general, but most of them have misperceptions about specific problems. In addition, teachers in general underestimate the academic abilities of children with epilepsy. ⁎ Corresponding author at: Istituto di Ricerche Farmacologiche "Mario Negri," Via G. la Masa 19, 20156 Milan, Italy. Fax: + 39 02/39001916. E-mail address: [email protected] (E. Beghi). 1525-5050/$ – see front matter © 2011 Elsevier Inc. All rights reserved. doi:10.1016/j.yebeh.2011.06.019

In Italy, surveys were conducted in the general population to document common people's knowledge and attitudes toward epilepsy [29,30], but no survey has been conducted yet among teachers. Thus, the aim of this study was to evaluate knowledge of epilepsy and attitudes toward children with epilepsy in a sample of teachers from primary and secondary schools, to decide whether appropriate educational campaigns are needed. 2. Materials and methods During the period March 18 through 28, 2010, a nationwide telephone interview by a professional agency for marketing research (DOXA) was commissioned by the Italian League Against Epilepsy (LICE). A total of 600 telephone interviews were conducted on a random sample of Italian schoolteachers, 300 from primary schools and 300 from secondary schools (first degree). Teachers to be interviewed were selected from an existing DOXA database, compiled through telephone surveys conducted over the past 2 years on a nationally representative sample of the adult Italian population. This ensures a high level of representativeness of the sample, which was obtained through random extraction, and the fact that the original source was represented by families of all Italian regions and of all types of municipalities in due proportions. The interviews were conducted

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with the CATI system (Computer-Assisted Telephone Interview) by a group of appropriately trained and supervised interviewers. The questionnaire used for the interview was a structured form comprising 28 questions (see Appendix) and investigated three major issues: (A) general and specific knowledge about epilepsy; (B) attitudes toward the social and individual implications of epilepsy; (C) school life-related attitudes. The demographics of each interviewed teacher were also collected and included gender, age, level of school (primary vs secondary), underlying geographic area (North, Center, South/Islands), size of home town (province chief town vs other), years of teaching, specific experience gained if working with disabled children, participation in training courses on disabling diseases, and number of pupils with epilepsy. These variables were used to stratify the sample at the analysis stage, which included descriptive statistics and, for each question, univariate analyses using the χ 2 test for heterogeneity or trend, Student's t test, analysis of variance, or comparable nonparametric tests as appropriate. Given the large number of tests performed, Bonferroni correction was used and the corresponding significance was set at the 0.0009 level. In addition, teachers participating in the survey were compared with the entire Italian population, which had been investigated 1 year earlier using a similar questionnaire [30]. Multivariate (logistic regression) analysis models were also employed, where the answers (yes/no) were the response variable and age, gender, school, geographic area (North vs. Center/South/Islands), size of home town, and experience with disabled children were the independent variables. For the purposes of multivariate analysis, a dichotomized response variable was used. Where questions were answered on a Likert scale (e.g., the answers to the question “Is epilepsy a limitation to marriage?” were “strongly,” “moderately,” “scarcely,” and “and “not at all”), the first two and the latter two answers were combined. The results of multivariate analysis are presented as odds ratios (ORs) with 95% confidence intervals (CIs). Among independent variables, age was treated as a continuous variable and gender, school level, region, and size of home town were dichotomized as described above. Statistical analysis was performed using the SPSS-13.0 for PC package (SPSS-13.0, Chicago, IL, USA). 3. Results 3.1. Sociodemographic characteristics of the sample The sample included 516 women (86%) and 84 men (14%) aged 22–70 years (mean = 49.3 years, SD = 8.3). Female predominance was even greater among elementary schoolteachers. The age groups were evenly distributed, with a modest predominance of individuals aged 50 years or older and no detectable trends in the comparison of primary and secondary schoolteachers. About 30% of teachers were from northwest Italy (the most largely populated area of the country). Seventy-one percent of interviewees lived in small- to medium-size towns, 57% had been teaching for more than 20 years, 40% had specific experience with disabled children, and 60% declared having participated in training courses on disabling diseases, with small but significant differences between primary and secondary schoolteachers (Table 1). 3.2. General and specific knowledge of epilepsy All but two teachers declared being aware of a disease called epilepsy, 33.8% had personal or familial experience with the disease, and 30.8% had an experience mediated by friends or acquaintances. In addition, in more than 50% of cases, the information on epilepsy was obtained through conversations with doctors, reading of scientific reports, or participation in educational courses. About one-fourth of teachers had witnessed an epileptic seizure in the class and almost the same proportion at home, in open spaces, on TV, or in a movie. As

Table 1 General characteristics of the sample (N = 600). Variable

Primary school N

Secondary school %

N

%

94.3 5.7

233 67

77.7 22.3

4.3 25.7 42.3 27.7

15 72 98 115

5.0 24.0 32.7 38.3

36.3 63.7

99 201

33.0 67.0

29.7 17.0 13.3 27.7 12.3

89 59 53 64 35

29.7 19.7 17.7 21.3 11.7

22.7 77.3

103 197

34.3 65.7

46.3 53.7

101 199

33.7 66.3

65.3 34.7

167 133

55.7 44.3

c

Gender Women 283 Men 17 a Age (years) b35 13 35–44 77 45–54 127 55+ 83 Teaching (years) b20 109 20+ 191 Residency and teaching place Northwest 89 Northeast 51 Central 40 South 83 Islands 37 b Chief town (province) Yes 68 No 232 Experience with disabled childrenb Yes 139 No 161 Attended courses on disabilitya Yes 196 No 104 a b c

P b 0.05. P b 0.005. P b 0.0001

a whole, about 60% of interviewees declared having seen a person seizing (Table 2). Only one-third of teachers were aware of the prevalence of epilepsy; 42% of them thought the disease occurred less frequently than it actually does. Fifty-five percent thought epilepsy is a hereditary or congenital disorder. However, only 10.9% considered the disease a mental disorder. Only 4 of 10 interviewees thought that people with epilepsy can recover completely, and about 90% knew that the disease is treated with drugs with specific mechanisms of action. However, only 10% of them were aware that surgery is a therapeutic option. Having direct experience with epilepsy does not seem to have influenced knowledge of the disease except for increasing awareness of the surgical option (15.8% vs 7.8%), although this difference did not attain significance (P = 0.002) according to our predefined levels, and the belief that antiepileptic drugs affect learning and behavior (P b 0.0001). In contrast, direct experience increased the belief that epilepsy is associated with impairment of learning abilities (P b 0.0001) and, to some extent, mental disturbances (P = 0.002). As well, participation in scientific meetings increased the likelihood of linking epilepsy with an increased risk of mental or behavioral disturbances (P b 0.0001). 3.3. Attitudes toward the social and individual implications of epilepsy Teachers considered epilepsy a serious limitation to driving (73.2% of cases), a regular job (39.7%), marriage (33%), sports activities (32.8%), and even procreation (26.4%). Having direct experience with seizures, living in a large or a small town, and having attended educational events did not seem to affect these attitudes (Table 3). 3.4. School life-related attitudes Forty-four percent of teachers declared having or having had students with epilepsy. However, only two-thirds of them received information on the disease from the child's parents. In addition, twothirds of teachers admitted being unaware of what they should do if a

O. Mecarelli et al. / Epilepsy & Behavior 22 (2011) 285–292 Table 2 General and specific knowledge of epilepsy (N = 600). Question

Table 3 Attitudes toward social and individual implications of epilepsy (N = 598).a N

1. Do you know the disease called “epilepsy”? Yes 598 No 2 2. Do you know epilepsy?a,b By hearsay 241 Personal or familial experience 202 Friends/acquaintances 184 Medical interviews 64 Scientific pamphlets 197 Training courses 74 3. Have you ever seen a seizure? a Classroom 148 Public place 134 Home 49 TV/movies 45 Never 254 4. What is the approximate prevalence of epilepsy in Italy? 1/10 28 1/100 203 1/1,000 174 1/10,000 50 1/100,000 25 1/1,000,000 4 Don't know 114 5. What do you think causes epilepsy?a Hereditary disease 329 Birth defect 324 Viral infection 121 Head injury 220 Brain tumor 175 Psychological/psychiatric disease 118 6. What is the age of onset of epilepsy? Childhood 221 Adult 5 All ages 362 Don't know 10 7. Do you think epilepsy is a form of psychiatric disease? Yes 65 No 510 Don't know 23 8. Do you think epilepsy is treatable witha: Specific drugs 553 Neurosurgery 63 Other methods 85 Don't know 23 9. Do you think epilepsy is a curable illness? Yes 243 No 280 Don't know 75 a b

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% 99.7 0.3 40.3 33.8 30.8 10.7 32.9 12.4 24.7 22.4 8.2 7.5 42.5 4.7 33.9 29.1 8.4 4.2 0.7 19.1 55.0 54.2 20.2 36.8 29.3 19.7 37.0 0.8 60.5 1.7 10.9 85.3 3.8 92.5 10.5 14.2 3.8 40.6 46.8 12.5

Multiple answers allowed. For questions 2–9, two teachers who answered “no” to question 1 were excluded.

child had a seizure. Fifty-eight percent of teachers thought they should place an object in the patient's mouth, and 68.4% would invariably call an ambulance. More than half of respondents admitted that administration of AEDs during class hours was difficult. Only onefourth of interviewees were convinced that epilepsy per se affected behavior and learning ability, whereas 40% reported that behavioral and learning problems are the consequences of drug treatment. However, 36.4% of teachers believed that children with epilepsy require personal assistance at school, although 78.9% still considered that attitudes toward and demands of these children should not differ from those of the remaining school population. In the opinion of 38.1% of interviewed teachers, classmates have normal interpersonal relationships with or even try to help children with epilepsy. Sports and recreational activities should overlap those of normal children according to 77.1% of responders. However, banned sports include, in decreasing order, boxing (67.4%), swimming (29.6%), skiing (24.1%), cycling (19.7%), and soccer (17.1%). Only 2.3% of teachers would prohibit any type of sports or recreational activity (Table 4).

Question 10. To what extent Strongly Moderately Scarcely Not at all Don't know 11. To what extent Strongly Moderately Scarcely Not at all Don't know 12. To what extent Strongly Moderately Scarcely Not at all Don't know 13. To what extent Strongly Moderately Scarcely Not at all Don't know 14. To what extent Strongly Moderately Scarcely Not at all Don't know

N does epilepsy limit marriage? 40 157 225 148 28 does epilepsy limit having children? 33 114 182 212 57 does epilepsy limit regular employment? 32 205 262 77 22 does epilepsy limit driving? 198 240 104 34 22 does epilepsy limit sports and leisure activities? 24 172 265 117 20

% 6.7 26.3 37.6 24.7 4.7 5.5 19.1 30.4 35.5 9.5 5.4 34.3 43.8 12.9 3.7 33.1 40.1 17.4 5.7 3.7 4.0 28.8 44.3 19.6 3.3

a Two teachers excluded for having declared not being aware of a disease named “epilepsy.”

Direct experience with seizures, a larger number of classmates with epilepsy, having witnessed an epileptic seizure, and participation in scientific meetings were correlated with better knowledge of the correct management of a seizure (P b 0.0001), but direct experience was also associated with some incorrect maneuvers like placing an object in the mouth (68.3 vs 52.5%, P b 0.0001). 3.5. Comparison of Italian teachers with the rest of the Italian population Compared with the Italian population, among teachers there were more individuals with overall awareness of epilepsy (99.7% vs 93.4%), personal exposure to the disease (33.8 vs 11.9%), and indirect experience resulting from conversations with doctors or reading of scientific reports (55.7 vs 5.3%). More teachers than others declared having witnessed an epileptic seizure, either directly or through common communication media (55.3 vs 45.1%) (Table 5). There were no differences between teachers and the rest of the Italian population with respect to knowledge of the prevalence and causes of epilepsy, but still teachers more than others considered epilepsy a disease with prevalent onset during infancy (37.0 vs. 17.3%). Compared with the general population, fewer teachers considered epilepsy a mental disorder (10.9% vs 36.5%), but fewer teachers also believed in the possibility of permanent seizure remission (40.6% vs 53.9%). Both teachers and the general population were fully aware that drugs are effective in controlling seizures (92.5% vs 86.2%), but both were unaware of the surgical option (10.5% vs 10.7%). Teachers more than others considered epilepsy a limitation to marriage (33.0% vs 19.6%) and procreation (24.6% vs 17.8%), but teachers were less inclined to consider epilepsy to be a limitation on regular employment (39.7% vs 57.0%) or to participation in sports or recreational activities (32.8% vs 57.6%). Both teachers and the general population believed that epilepsy is a serious limitation to regular driving (73.2 vs. 68.1%). Few individuals in both groups declared knowing how to manage an epileptic seizure (33.6% vs 36.9%).

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O. Mecarelli et al. / Epilepsy & Behavior 22 (2011) 285–292 Table 4 (continued)

Table 4 School life-related attitudes (N = 598).a Question

Question N

%

15. Have you ever had children with epilepsy in your classroom? 263 44.0 Yes If Yes, how many ? 1 151 25.3 2 53 8.9 3 24 4.0 N3 35 5.9 16. How often have you been informed by parents of the form of (263) epilepsy their child has? Always 171 65.0 Only in some cases 46 17.5 Never 46 17.5 17. Do you know how to manage a child experiencing an epileptic attack? Very well 31 5.2 Moderately 170 28.4 Poorly 252 42.1 Don't know 145 24.3 18. In the case of a seizure in class (with loss of consciousness, drop, and spasms b to the whole body) what would you do? Call an ambulance 409 68.4 Have the person lie down on the ground and wait until the end 322 53.8 of the attack Place something in the child's mouth 346 57.9 Block the spasms of the limbs 73 12.2 Administer medications endorectally 46 7.7 Would not know what to do 12 2.0 19. In your school are there difficulties in administering antiepileptic drugs during school hours? Yes 305 51.0 No 189 31.6 Don't know 104 17.4 20. In your opinion, to what extent does epilepsy impair children's learning? Strongly 27 4.5 Moderately 121 20.2 Scarcely 210 35.1 Not at all 218 36.5 Don't know 22 3.7 21. In your opinion, to what extent do children with epilepsy require support in school? Strongly 57 9.5 Moderately 161 26.9 Scarcely 158 26.4 Not at all 200 33.4 Don't know 22 3.7 22. To what extent do children with epilepsy have mental and/or behavior alterations? Strongly 20 3.3 Moderately 136 22.7 Scarcely 259 43.3 Not at all 144 24.1 Don't know 39 6.5 23. In your opinion, to what extent do antiepileptic drugs affect learning and behavior? Strongly 42 7.0 Moderately 197 32.9 Scarcely 182 30.4 Not at all 58 9.7 Don't know 119 19.9 24. In your opinion, to what extent do children with epilepsy have relationship problems with other children? Strongly 16 2.7 Moderately 149 24.9 Scarcely 236 39.5 Not at all 185 30.9 Don't know 12 2.0 25. Compared with their healthy classmates, how should children with epilepsy be treated with respect to attitudes and demands? The same 468 78.3 Differentiated 113 18.9 Don't know 17 2.8 26. Based on your experience, how do classmates behave toward a child with epilepsy? Normally 228 38.1 Try to help 279 46.7 Tend to marginalize 29 4.8 Don't know 62 10.4

N

%

27. In your experience, recreational and sports activity of the child with epilepsy must be: Normal 461 77.1 Limited 82 13.7 Don't know 55 9.2 28. Which of the following sports do you think should absolutely not be b recommended for a child with epilepsy? Soccer 102 17.1 Tennis 43 7.2 Swimming 177 29.6 Skiing 144 24.1 Athletics 36 6.0 Boxing 403 67.4 Cycling 118 19.7 All 14 2.3 Don't know 93 15.6 a Two teachers excluded for having declared not being aware of a disease named “epilepsy.” b Multiple answers allowed.

3.6. Knowledge and attitudes toward epilepsy and teachers’ profiles Compared with teachers employed for less than 20 years, those employed for 20 or more years had taught a larger number of children with epilepsy in school (P b 0.0001), had had more direct experience with seizures in class (31.5% vs 12.0%, P b 0.0001), and would have correctly managed a witnessed seizure (59.0% vs 44.2%, P b 0.0001). A number of different factors from the teachers’ profiles predicted correct or incorrect knowledge and attitudes toward children with epilepsy in multivariate analysis models. Residency in Central or Southern Italy or on the islands was the only factor predicting the belief that epilepsy is a mental disorder (OR = 2.1, 95% CI = 1.2–3.7). Epilepsy as a strong limitation for procreation was predicted only by male gender (OR = 2.7, 95% CI = 1.3–5.5). Teachers living in Northern Italy were less likely than teachers living elsewhere to consider children with epilepsy in need of support teaching (OR = 0.7, 95% CI = 0.5–0.9). More accurate knowledge of the age at onset of epilepsy was predicted by a teacher's younger age (OR = 0.97, 95% CI = 0.95–0.99 for each increasing year) and by teaching in an elementary school (OR = 1.4, 95% CI = 1.0–2.1). Correct management of an epileptic seizure was predicted by living in Northern Italy (OR = 1.6, 95% CI = 1.1–2.2) and having experience with support teaching (OR = 1.8, 95% CI = 1.2–2.5). Believing that epilepsy causes learning difficulties was predicted by male gender (OR = 2.4, 95% CI = 1.2–4.8) and older age (OR = 1.03, 95% CI = 1.01–1.06 for each increasing year), and believing epilepsy is a source of mental disturbances was predicted by living in Central or Southern Italy or on the islands (OR = 1.5, 95% CI = 1.0–2.3) and by teaching in a secondary school (OR = 1.8, 95% CI = 1.2–2.7). There were no differences in the teachers’ profiles that could predict attitudes toward marriage, occupation, driving, sports, and management of an epileptic seizure. As well, knowledge of epilepsy prevalence, causes, outcome, treatment and adverse effects of drugs was fairly similar when comparing teachers with different gender, age, residency, and teaching experience (data not shown). 4. Discussion This survey shows that Italian teachers are fully aware of the existence of epilepsy and have for the most part direct or indirect experience with the disease, as about one-third of them have had direct contact with the disease and almost half have or had children with epilepsy in their classes. However, in line with several reports from developed and developing countries [1,13,14,19,21,22,24,27], Italian teachers’ specific knowledge of epilepsy is fair, as indicated by the small

O. Mecarelli et al. / Epilepsy & Behavior 22 (2011) 285–292 Table 5 Comparison of the results of the survey conducted in Italy on the general population (2009) with results of the present survey of teachers.a Question

N (1556)

%

N (600)

1. Do you know the disease called “epilepsy”? Yes 1453 93.4 598 2. Do you know epilepsyb: By hearsay 823 56.6 241 Personal or familial experience 173 11.9 202 Friends/acquaintances 380 26.2 184 Doctor/scientific information 77 5.3 335 3. Have you ever seen a seizure?b Yes, personally (home, public, classroom) 656 45.1 331 Yes, TV/movies 273 18.8 45 Never 550 37.9 254 4. What is the approximate prevalence of epilepsy in Italy? About 1/100 (correct response) 425 29.2 174 5. What do you think causes epilepsy?b Hereditary disease 742 51.1 329 Birth defect 811 55.8 324 Viral infection 371 25.5 121 Head injury 906 62.4 220 Brain tumor 476 32.8 175 Psychological/psychiatric disease 815 56.1 118 6. What is the age of onset of epilepsy? Childhood only 252 17.3 221 All ages 1045 71.9 367 Don't know 156 10.7 10 7. Do you think epilepsy is a form of psychiatric disease? Yes 531 36.5 65 No 789 54.3 510 Don't know 133 9.2 23 8. Do you think epilepsy is treatable withb: Specific drugs 1252 86.2 553 Neurosurgery 156 10.7 63 Other methods/don't know 544 37.4 108 9. Do you think epilepsy is a curable illness? Yes 783 53.9 243 No 516 35.5 280 Don't know 154 10.6 75 10. To what extent does epilepsy limit marriage? Strongly/moderately 285 19.6 197 11. To what extent does epilepsy limit having children? Strongly/moderately 259 17.8 147 12. To what extent does epilepsy limit regular employment? Strongly/moderately 829 57.0 237 14. To what extent does epilepsy limit sports and leisure activities? Strongly/moderately 837 57.6 196 13. To what extent does epilepsy limit driving? Strongly/moderately 1154 68.1 438 14. Do you know how to manage a person experiencing an epileptic attack? Yes 536 36.9 201 a b

% 99.7 40.3 33.8 30.8 55.7 55.3 7.5 42.5 29.1 55.0 54.2 20.2 36.8 29.3 19.7 37.0 61.3 1.7 10.9 85.3 3.8 92.5 10.5 18.0 40.6 46.8 12.5 33.0 24.6 39.7 32.8 73.2 33.6

Only the answers to the same questions are shown. Multiple answers allowed.

proportion of interviewees reporting that the disease is most frequent among schoolchildren and the still large proportion of them considering epilepsy as a hereditary disease and not knowing that surgery is a therapeutic option. Even less satisfactory are the teachers’ inability to manage a seizing child and their strong attitudes toward occupation, sports, and, more importantly, marriage and procreation. Inability to manage an epileptic seizure has been reported by several investigators, mostly from resource-poor countries [13,17,18,20,26,28]. Teachers differ from the general population in some specific aspects, such as having a better education and an occupation that predisposes them to having contact with children with epilepsy. However, this advantage does not always translate into better knowledge of and attitudes toward the disease. Compared with the general population, fewer teachers considered epilepsy a mental disorder, and fewer teachers believed permanent seizure remission was possible. Teachers were more inclined than the general population to consider epilepsy compatible with a regular job or with sports or recreational activities, but more than others they considered epilepsy a limi-

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tation to marriage and procreation. In this regard, our findings are in keeping with others that show epilepsy is an obstacle to marriage and employment of an affected individual [11,22,26,27]. The poor knowledge of epilepsy and negative attitudes among teachers can be explained in part by the limited information received from the children's families and the difficulties reported with drug administration at school. Others have reported that inadequate information from parents of children with epilepsy is a possible explanation for teachers’ inability to manage a child with epilepsy [14]. All these findings seem to support the idea that epilepsy is still a fairly obscure and stigmatizing clinical condition even among persons with a higher than average cultural background and more exposure to the clinical manifestations of the disease. This observation highlights the need to increase educational campaigns promoted by scientific societies and lay associations. These campaigns should also involve students. Poor knowledge of the characteristics of epilepsy and its impact on social activities among schoolchildren and university students in Rome, Italy, has, in fact, been reported [31]. In our study, direct experience with seizures, a larger number of students with epilepsy, witnessing an epileptic seizure, and participation in scientific meetings were all correlated with better knowledge of the correct management of an epileptic seizure, with some exceptions. Longer teaching experience has been found by others to be correlated with better knowledge of epilepsy [16]. In addition, positive effects of educational seminars on awareness of and attitudes toward epilepsy have been reported [15]. However, our survey has demonstrated that direct experience with epilepsy increases the belief that the disease impairs learning ability and, together with participation in scientific meetings, increases the belief that epilepsy is a source of mental disturbances. In addition, direct experience with seizures and attendance at educational programs do not seem to affect teachers’ attitudes toward epilepsy. As teachers do not receive any formal instruction on epilepsy and other childhood illnesses during their training, they may be prone to passively accept any type of information conveyed by uncontrolled sources. This prompts the need to improve educational initiatives by exerting better control of their content, which should be more in line with evidence-based guidelines and recommendations. Interestingly, there were few features of the teachers’ profiles that exerted a significant influence on knowledge of and attitudes toward epilepsy. These include age (and length of teaching experience), gender, school level, and geographic area. Younger teachers and those with less teaching experience had better knowledge of the age at onset of epilepsy and the infrequent association of the disease with learning impairment. This may reflect, on the one hand, the better background knowledge of younger compared with older individuals. However, the longer experience of older teachers with children with epilepsy may, on the other hand, give them the false impression that epilepsy is a frequent source of learning disabilities, which may be based on direct contacts with a limited number of affected pupils having serious learning problems (perhaps the ones most frequently brought by parents to the teacher's attention). Compared with men, interviewed women were less likely to consider epilepsy a serious limitation to having children and more likely to believe that children with and without epilepsy should be managed similarly. This observation has no clear explanation. Teachers working in elementary school seem to have better knowledge than those employed in secondary school about some aspects of the disease (e.g., age at onset and association with mental disturbances). This, again, may reflect the influence of a more solid theoretical background (age at onset), but also exposure to psychiatric symptoms accompanying the disease, which may occur more frequently during adolescence [6–8,32,33]. The association between the belief that epilepsy is a psychiatric disorder and a disease accompanied by mental disturbances and/or requiring additional teaching support can be explained by the different sociocultural background of persons living in Northern Italy compared with people in the rest of the country. This same

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explanation cannot be offered for the observation that teachers from Northern Italy are less favorable toward managing children with and without epilepsy in the same way. This finding can be explained by other, at present, unknown factors. This study has strengths and limitations. The major strength is the size and representativeness of the sample included in the survey. Despite the fairly old age and the large predominance of women, our teachers are a representative sample of persons teaching in Italian primary and secondary schools. According to the Organisation for the Economic Cooperation and Development (OECD, 2010), 94.3% of teachers in primary schools and 77.7% of those in secondary schools are women (www.oecd.org/dataoecd). On this basis, our findings can be confidently generalized to the overall Italian population. The first major limitation is the type of questions, which may leave room to differing interpretations, with consequent loss of precision in the answers. A second major limitation is the limited number of issues explored by the entire interview. For example, we did not investigate attitudes toward having contact with people with epilepsy. A third limitation is that, despite this fairly large sample, subgroup comparisons are prohibited by small numbers. In conclusion, our study has shown that (Italian) teachers have, with some exceptions, fairly satisfactory knowledge of epilepsy, its causes, outcome, and treatments. Despite this positive finding, the attitudes of teachers toward epilepsy and its interference with daily life activities are still largely negative. Teachers with more direct experience and contact with children with epilepsy state that they are aware of the correct management of an epileptic seizure although they consider some incorrect maneuvers as part of correct practice. In contrast, more experienced teachers have a greater tendency to correlate epilepsy with learning deficits and/or mental disturbances. The sociocultural environment may have influence on the incorrect information of epilepsy and some negative attitudes towards the disease. The knowledge of and attitudes toward epilepsy of the general population may also affect teachers’ specific knowledge and attitudes when managing affected children at school. These observations provide the necessary background to the Italian League Against Epilepsy's continuing its educational activities aimed at increasing knowledge of epilepsy and eliminating stigma. Conflict of interest statement None of the authors has any conflict of interest to disclose with reference to the contents of this article. Acknowledgments This study was endorsed by the Italian League Against Epilepsy (LICE). UCB Pharma is gratefully acknowledged for providing financial support to the study. Appendix A. Survey questionnaire A. General and specific knowledge of epilepsy 1. Do you know the disease called “epilepsy”? 2. Do you know epilepsy: By hearsay Personal or familial experience Friends/acquaintances Medical interviews Read scientific pamphlets Participation in training courses 3. Have you ever seen a seizure? Classroom Public place Home

Yes/No

4.

5.

6.

7.

8.

9.

TV/movies Never What is the approximate prevalence of epilepsy in Italy? 1/10 1/100 1/1,000 1/10,000 1/100,000 1/1,000,000 Don't know What do you think causes epilepsy? Hereditary disease Birth defect Viral infection Head injury Brain tumor Psychological disease What is the age of onset of epilepsy? Childhood Adult All ages Don't know Do you think epilepsy is a form of psychiatric disease? Yes No Don't know Do you think epilepsy is treatable with: Specific drugs Neurosurgery Other methods Don't know Do you think epilepsy is a curable illness? Yes No Don't know

B. Personal and social implications 10. To what extent does epilepsy limit Strongly Moderately Scarcely Not at all Don't know 11. To what extent does epilepsy limit Strongly Moderately Scarcely Not at all Don't know 12. To what extent does epilepsy limit Strongly Moderately Scarcely Not at all Don't know 13. To what extent does epilepsy limit Strongly Moderately Scarcely Not at all Don't know

marriage?

having children?

regular employment?

driving?


14. To what extent does epilepsy limit sports and leisure activities? Strongly Moderately Scarcely Not at all Don't know C. School life-related attitudes 15. Have you ever had children with epilepsy in your classroom? Yes/No If Yes, how many? 1 2 3 N3 16. How often have you been informed by parents of the form of epilepsy their child has? Always Only in some cases Never 17. Do you know how to manage a child experiencing an epileptic attack? Very well Moderately Poorly Don't know 18. In the case of a seizure in class (with loss of consciousness, drop, and spasms of the whole body) what would you do? Call an ambulance Have the person lie down on the ground and wait until the end of the attack Place something in the child's mouth Block the spasms of the limbs Administer medications endorectally Would not know what to do 19. In your school are there difficulties in administering antiepileptic drugs during school hours? Yes No Don't know 20. In your opinion, to what extent does epilepsy impair children's learning? Strongly Moderately Scarcely Not at all Don't know 21. In your opinion, to what extent do children with epilepsy require support in school? Strongly Moderately Scarcely Not at all Don't know 22. To what extent do children with epilepsy have mental and/or behavior alterations? Strongly Moderately Scarcely Not at all Don't know 23. In your opinion, to what extent do antiepileptic drugs affect learning and behavior? Strongly Moderately Scarcely Not at all Don't know

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24. In your opinion, to what extent do children with epilepsy have relationship problems with other children? Strongly Moderately Scarcely Not at all Don't know 25. Compared with their healthy classmates, how should children with epilepsy be treated with respect to attitudes and demands? The same Differently Don't know 26. Based on your experience, how do classmates behave toward a child with epilepsy? Normally Try to help Tend to marginalize Don't know 27. In your experience, recreational and sports activity of the child with epilepsy must be: Normal Limited Don't know 28. Which of the following sports do you think should absolutely not be recommended for a child with epilepsy? Soccer Tennis Swimming Skiing Athletics Boxing Cycling All References [1] Bannon MJ, Wildig C, Jones PW. Teachers’ perceptions of epilepsy. Arch Dis Child 1992;67:1467–71. [2] 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(Suppl 2): 26–32. [3] Jacoby A. Stigma, epilepsy, and quality of life. Epilepsy Behav 2002;3(Suppl 2): 10–20. [4] Morrell MJ. Stigma and epilepsy. Epilepsy Behav 2002;3(Suppl 2):21–5. [5] Jacoby A, Austin JK. Social stigma for adults and children with epilepsy. Epilepsia 2007;48(Suppl 9):6–9. [6] Baker GA, Hargis E, Hsih MS, et al. Perceived impact in teenagers and young adults: an international survey. Epilepsy Behav 2008;12:395–401. [7] Bailet LL, Turk WR. The impact of childhood epilepsy on neuro cognitive and behavioural performance: a prospective longitudinal study. Epilepsia 2000;43: 631–7. [8] Macleod JS, Austin JK. Stigma in the lives of adolescents with epilepsy: a review of the literature. Epilepsy Behav 2003;4:112–7. [9] Herranz Fernández JL, Lastra Martínez LA, González González A, et al. Knowledge and attitude of professors concerning epilepsy: evaluation of a survey conducted on 4,099 professors of Cantabria. An Esp Pediatr 1990;33:523–7. [10] Mielke J, Adamolekun B, Ball D, Mundanda T. Knowledge and attitudes of teachers towards epilepsy in Zimbabwe. Acta Neurol Scand 1997;96:133–7. [11] Kankirawatana P. Epilepsy awareness among school teachers in Thailand. Epilepsia 1999;40:497–501. [12] Hsieh LP, Chiou HH. Comparison of epilepsy and asthma perception among preschool teachers in Taiwan. Epilepsia 2001;42:647–50. [13] Ojinnaka NC. Teachers’ perception of epilepsy in Nigeria: a community-based study. Seizure 2002;11:386–91. [14] Prpic I, Korotaj Z, Vlasic-Cicvaric I, Paucic-Kirincic E, Valerjev A, Tomac V. Teachers’ opinions about capabilities and behavior of children with epilepsy. Epilepsy Behav 2003;4:142–5. [15] Bekiroglu N, Ozkan R, Gurses C, Arpaci B, Dervent A. A study on awareness and attitude of teachers on epilepsy in Istanbul. Seizure 2004;13:517–22. [16] Bishop M, Slevin B. Teachers’ attitudes toward students with epilepsy: results of a survey of elementary and middle school teachers. Epilepsy Behav 2004;5: 308–15.

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