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Knowledge of management of epilepsy in young adults in Jordan
Epilepsy & Behavior 9 (2006) 349–354 www.elsevier.com/locate/yebeh
Knowledge of management of epilepsy in young adults in Jordan Sameer A. Otoom
a,*
, Saafan A. Al-Safi b, Reginald P. Sequeira c, Ahmad S. Alkofahi
d
a
d
Royal College of Surgeons in Ireland/Medical University of Bahrain, P.O. Box 15503, Adliya, Bahrain b Department of Clinical Pharmacy, Jordan University of Science and Technology, Irbid, Jordan c Department of Pharmacology and Therapeutics, Arabian Gulf University, Manama, Bahrain Department of Medicinal Chemistry and Pharmacognosy, Jordan University of Science and Technology, Irbid, Jordan Received 23 February 2006; revised 14 June 2006; accepted 16 June 2006 Available online 1 August 2006
Abstract Purpose. Nationwide studies on public knowledge of epilepsy have been undertaken in several countries, but not in Jordan. The purpose of this study was to evaluate knowledge of the management of epilepsy in Jordan. Methods. A cross-sectional study was performed during the period February–June 2005 on 16,044 individuals selected randomly to represent all regions of Jordan. Respondents were interviewed and asked to complete a five-item questionnaire testing their knowledge of the management of epilepsy. Results. Most of the individuals (77.9%) agreed that patients with epilepsy are best treated in a specialized hospital for neurological diseases. Although the largest percentage of the sample (86.7%) agreed that the best person to treat epilepsy is a neurologist, others believed that a hypnotherapist (25.4%) or a religious healer (22.6%) is. As an immediate measure during an attack of epilepsy, most respondents (82.6%) agreed that protecting the patient’s head is most important. During the postseizure period, 45.8% of respondents believed that offering the patient water or a cold or hot drink is appropriate. Two-thirds of the respondents (66.2%) agreed that epilepsy can be treated with drugs. Responses of the participants to the five items significantly differed with respect to age, gender, level of education, and occupation. Conclusion. Jordanians are reasonably well informed about most aspects of the management of epilepsy, but there is still a need for public education about this disorder. Ó 2006 Elsevier Inc. All rights reserved. Keywords: Epilepsy; Management; Knowledge; Jordan
1. Introduction Epilepsy is the most serious neurological disease after stroke, with a prevalence rate of 0.5% [1]. Despite medical treatment, 30 to 40% of people with epilepsy are severely affected and continue to have seizures. Additionally, these patients are exposed to psychosocial difficulties and discrimination [2]. Most people with epilepsy have a social stigma, in part because of the negative attitude of the community toward their condition. This may cause them greater suffering than *
Corresponding author. Fax: +973 17583600. E-mail addresses: [email protected], [email protected] (S.A. Otoom). 1525-5050/$ - see front matter Ó 2006 Elsevier Inc. All rights reserved. doi:10.1016/j.yebeh.2006.06.012
the disease itself or the adverse effects of the medications used to treat this condition [2,3]. Understanding this stigma requires examination of the attitudes of not only the epileptic patients, but also the community [3]. Such an understanding can be attained through knowledge– attitude–practice studies of the public. These studies play an important role in facilitating the integration of persons with epilepsy into their societies and improving their quality of life (QOL). Moreover, these studies have implications in how public education campaigns should be planned and implemented to enhance the understanding of the general public about epilepsy [2]. Substantial research has been done on the public’s knowledge of and attitudes toward epilepsy. These studies reported different findings that are affected by the historic,
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ethnic, and social backgrounds of the country. Knowledge of and attitudes toward epilepsy have been studied in Europe [3,4], North America [5], South America [6], Asia [2,7], and Africa [8]. A cross-sectional study carried out on individuals in Al-Ain City, Dubai, and Sharjah, United Arab Emirates, revealed that the knowledge of, awareness of, and attitudes toward epilepsy in this country were suboptimal compared with Western countries [9]. The other study was performed in Oman, but it assessed physicians’ and not the general public’s awareness of and attitudes toward epilepsy [10]. Two more recent studies have addressed epilepsy-related QOL issues. Analysis of the impact of epilepsy and its treatment on QOL revealed that many respondents feel stigmatized by their epilepsy. There were significant differences between the QOL profiles of respondents in this study and those of an earlier, parallel study in Europe [11]. In contrast, a survey study from Tunisia, although demonstrating impaired QOL, identified different influencing factors [12]. Several possible reasons, such as family support and cultural and religious beliefs, were proposed to explain these cross-cultural differences. Health services in Jordan are delivered through the government, private hospitals, and family/community health centers. Since the early 2000s, the Ministry of Health has been developing a primary health care system through family health centers. Patients with epilepsy are referred from primary health care clinics to hospitals where they are treated in an outpatient clinic [13]. Admission of patients with epilepsy to hospitals is limited and done mainly for patients with status epilepticus. Patients also seek private neurologists for treatment, which may be administered in the clinic or, by referral, in a private hospital. The Jordanian health system operates through health insurance schemes, with 59% provided through private health insurance. Government health insurance schemes are available for government employees (civilian and military) and their families [13]. This large survey study performed during February– June 2005 involved two main objectives. (1) ascertainment of Jordanians’ knowledge of and attitudes toward epilepsy, the results of which will be reported elsewhere; and (2) ascertainment of Jordanians’ knowledge of the management of epilepsy, which is the focus of this article. 2. Methods The questionnaire used for this study was based on published surveys [5,14,15], modified to incorporate sociocultural aspects of Jordan. The questionnaire was translated into Arabic to be congruent with Jordanian dialect. The interviewers were trained to read questionnaire items in the local dialect of spoken Arabic and record the responses accordingly. A rigorous sampling methodology was not applied for reasons related to resources, and the sample consisted primarily of a convenience sample of households that agreed to participate. The sample was selected randomly from all regions of Jordan. Administratively, Jordan is divided into 12 governorates, which are then grouped into three regions: the North region (Irbid, Jarash, Ajloun, and Mafraq), the Central region (Amman, Zarqa, Balqa, and Madaba), and the South region (Karak, Tafielah, Ma’an, and
Aqaba). Each region was divided into blocks, and every other house on that block was sampled. Only one person in the house was allowed to participate in the investigation and was interviewed in the absence of other family members. The length of the interview ranged from 30 to 90 minutes. Participants were asked to complete a questionnaire eliciting sociodemographic data such as age, sex, place of residence, occupation, and level of education and asking five questions on the management of epilepsy. 1. What is the best place to treat an epileptic patient? 2. Who is the best person to treat an epileptic patient? 3. What are the first-aid measures used to rescue a patient during an epileptic seizure? 4. Immediately after a patient resumes consciousness from an attack of epilepsy, what do you do next? 5. Do you think epilepsy is treated with drugs? These questions were answered with the response ‘‘agree,’’ ‘‘disagree,’’ or ‘‘do not know.’’ The participants were given a brief explanation of the purpose of the survey. All items were read to the participants, whereas others (22.3%) completed the questionnaire themselves. The study was supported by the Faculty of Pharmacy, Jordan University of Science and Technology, and was conducted mainly by senior pharmacy students who were trained to use consistent sampling selection criteria. They were also trained to explain, to the respondents, the importance of participating in the study to improve the public’s knowledge about this condition. Health care professionals involved directly in patient care, such as medical doctors, nurses, pharmacists, and paramedics, were excluded.
2.1. Statistics Data are expressed as means ± SD. Statistical analysis was carried out using the v2 test through a computerized SPSS program. P values less than 0.05 were considered statistically significant.
3. Results The total sample for this investigation comprised 16,500 individuals. Of these, 16,044 agreed to participate and complete the questionnaire, yielding a response rate of 97.2%. The numbers (%) of males and females were 8158 (50.8%) and 7886 (49.2%) respectively. Mean age ± SD for the sample was 26.69 ± 10.13 years (range: 18–85 years), and for males and females, 27.52 ± 10.60 and 25.84 ± 9.56 years, respectively. Young adults, 18 to 39 years old, constituted the largest proportion (86.7%) of respondents (Table 1). The majority of the sample (82.2%) had more than 12 years of education. Most of them (61.3%) worked in non-health-related professions. The remaining respondents (38.7%) were not involved directly in health care management; they were employed in professions related to the health sector (e.g., administrators, laboratory technicians). Most of the individuals agreed that a specialized hospital for neurological diseases (77.89%) or a neurology outpatient clinic (72.3%) is the best place to treat patients with epilepsy (Table 2). Only 7.6% thought that these patients should be treated in places offering herbal medications. The largest proportion of the sample (86.7%) agreed that a neurologist is the best person to treat epilepsy (Table 3). Interestingly, 25.4 and 22.6% of the sample thought that hypnotherapists and religious healers, respectively, were
S.A. Otoom et al. / Epilepsy & Behavior 9 (2006) 349–354
the best persons to treat patients with epilepsy. These proportions were higher than the proportion of respondents who answered in favor of general practitioners (17.1%). As an immediate measure during an attack of epilepsy, most respondents (82.6%) agreed that protecting the patient’s head is most important (Table 4). A large proportion of the participants also agreed that removal of objects near patients (81.5%) and maintenance of ventilation (81.9%) are important measures. The respondents believed that as a first-aid measure, the patient’s tongue should be pulled (37%) and an object inserted between the teeth (26.4%). In the postseizure period, 45.8% of the sample agreed that the patient should be offered a drink, but disagreed (37.1%) over whether the dose of antiepileptic drug should be increased. As many as 66.2% of the respondents agreed that epilepsy can be treated with drugs, but only 23.4% knew a drug that can be used to treat this condition. Table 1 Demographic characteristics of the sample
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Table 3 Who is the best person who can treat patients with epilepsy? Response
Frequency (%) Agree
Disagree
Don’t know
General practitioner Family physician Neurologist Psychiatrist Acupuncture specialist Hypnotherapist Religious healer
2,749 (17.1) 3,394 (21.2) 13,908 (86.7) 7,144 (44.5) 2,090 (13.0) 1,811 (11.3) 3,618 (22.6)
11,049 (68.9) 10,260 (64.0) 1,053 (6.6) 6,447 (40.2) 9,300 (58.0) 10,155 (63.3) 8,733 (54.4)
2246 2390 1083 2453 4654 4078 3693
(14.0) (14.9) (6.8) (15.3) (29.0) (25.4) (23.0)
The participants with the highest ‘‘agree’’ percentages (those who answered a neurology hospital in question 1, a neurologist in question 2, protecting the patient’s head in question 3, offering the patient a drink in question 4, and drugs can treat epilepsy in question 5) differed with respect to age, gender, level of education, and occupation (v2, P < 0.001) (Table 5).
Parameter
Frequency
Percentage
4. Discussion
Age 18–39 40–59 60–85
13,913 1,914 217
86.7 11.9 1.4
7,886 8,158
49.2 50.8
Education Low (0–6 years) Intermediate (7–12 years) High (>12 years)
625 2,238 13,181
3.9 13.9 82.2
Ethnicity Jordanian Palestinian Syrian Othera
11,173 1,692 1,846 1,333
69.6 10.6 11.5 8.3
6,203 9,841
38.7 61.3
This study investigated the level of knowledge of epilepsy in a random sample of the Jordanian public. Our sample target comprised 16,500 individuals, and the response rate was very high. In general, the Jordanian public was cooperative, especially when the importance of this study was explained to them by the trained interviewers. For the most part, respondents showed an interest in participating once epilepsy was mentioned, as they believe this disease is serious and associated with religious connotations. The translation of the questionnaire items from English to Arabic was also a motivating factor encouraging participation. This high response to participating in studies was demonstrated previously when 14,310 adults agreed to participate in a study about the distribution of blood pressure and heart rate in Jordan [16]. Overall, the study sample appeared generally well informed about this chronic health condition, including their preferences for the best health care provider, the best health care setting, and the first-
Gender Female Male
Occupation Health-related Non-health-related a
Mainly Egyptians and Iraqis.
Table 2 What is the best place to treat patients with epilepsy? Response
Frequency (%) Agree
Disagree
Don’t know
General practitioner outpatient clinic Neurology outpatient clinic Psychiatry outpatient clinic Emergency department in a general hospital Specialized hospital for neurological disorders Specialized hospital for psychiatric disorders Places offering herbal medications Places offering acupuncture treatment Places offering hypnotherapy Religious places of worshipa Othersb
3,596 (22.4) 11,602 (72.3) 6,412 (40.0) 4,180 (26.1) 12,497 (77.9) 6,400 (39.9) 1,225 (7.6) 2,168 (13.5) 1,881 (11.7) 3,759 (23.4) 1,689 (10.5)
9335 (58.2) 2,398 (15.00) 6,693 (41.7) 9,248 (57.6) 1,794 (11.2) 6,825 (42.5) 11,513 (71.8) 8,910 (55.5) 9,314 (58.1) 8,071 (50.3) 6,514 (40.6)
3113 2044 2939 2616 1753 2819 3306 4966 4849 4214 7841
a b
Includes mosques and churches. Includes places where other complementary and alternative medical therapies are provided.
(19.4) (12.7) (18.3) (16.3) (10.9) (17.6) (20.6) (31.0) (30.2) (26.3) (48.9)
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Table 4 What are the first-aid measures used to rescue a patient during an epileptic seizure? Response
Frequency (%) Agree
Disagree
Don’t know
Pulling patient’s tongue Removing objects near patient Protecting patient’s head Maintaining ventilation Transporting patient to hospital Waiting until seizure is over Inserting an object between patient’s teeth Keeping the patient in the lying position Removing objects from patient’s mouth Unbuttoning patient’s shirt Clearing patient’s mouth to allow saliva flow
6721 (41.9) 13,077 (81.5) 13250 (82.6) 13,133 (81.9) 11,457 (71.4) 7,998 (49.9) 8,804 (54.9) 10,698 (66.7) 11,242 (70.1) 5,897 (36.8) 7,536 (47.0)
3411 (21.3) 984 (6.1) 822 (5.1) 700 (4.4) 2512 (15.7) 4938 (30.8) 3005 (18.7) 1416 (8.8) 1576 (9.8) 4497 (28.0) 2477 (15.4)
5912 1983 1972 2211 2075 3108 4235 3930 3226 5650 6031
(36.9) (12.4) (12.3) (13.8) (12.9) (19.4) (26.4) (24.5) (20.1) (35.2) (37.6)
Table 5 Parameters affecting epilepsy knowledge of Jordanian adults aged 18–85 Parameter
Best place to treat epilepsy (neurology hospital)
Best person to treat epilepsy (neurologist)
First-aid measure during attack (protecting patient’s head)
Measure immediately post-seizure (offer the patient water, cold or hot drink)
Epilepsy can be treated by drugs
Gender Male Female
70.9 73.8
85.1 88.3
81.5 83.7
48.6 42.8
66.0 66.4
Agea 18–39 40–5 P60
71.9 75.6 71.4
86.4 88.8 84.3
82.2 85.3 83.0
45.0 50.0 58.1
65.1 73.8 67.7
Occupationa Health-related Non-health-related
76.4 69.6
89.6 84.7
88.3 78.8
46.6 45.1
73.0 61.7
Education levela Low (0–6 years) Intermediate (7–12 years) High (>12 years)
64.8 66.9 73.6
74.6 83.4 87.8
69.6 81.1 83.5
43.0 47.0 45.7
67.74 66 66.52
a
P < 0.00001.
aid measures to be undertaken in case of an epileptic seizure. Factors such as age, gender, level of education, and occupation were predictive of good levels of knowledge about epilepsy. The present study adds to the literature on epilepsy by assessing the perception of knowledge of epilepsy in representative Jordanian adults. This is the first study from Jordan to evaluate the public’s knowledge of epilepsy, although abundant information is already available, mostly from developed countries. Because public knowledge is influenced by sociocultural values and historic perspectives of the region, conclusions based on this study may be applicable to other Middle Eastern countries with shared ethnic, social, and religious values. Cross-cultural studies have found that knowledge of epilepsy is scant and attitudes toward the disorder can vary [17–19]. It has been demonstrated that concurrently held medical (i.e., neurological) and nonmedical (i.e., metaphysical) beliefs and attitudes about epilepsy have led to stigmatizing attitudes toward people with epilepsy in many societies throughout history [20]. Although knowledge of, attitudes toward, and beliefs
about epilepsy have improved worldwide, misperceptions about the disorder persist [21]. In the United States, knowledge about epilepsy was not associated with race/ethnicity, but was associated with sex, age, and education. Those with a college-level education were most likely to be knowledgeable about epilepsy [22]. Consistent with previous studies from the region [9] and South Korea [14], both age and level of education are important factors affecting knowledge of epilepsy; we found that gender and occupation also are important factors predictive of good levels of knowledge about epilepsy in the Jordanian public. Complementary and alternative medicine, such as acupuncture and hypnotherapy, were believed to be preferred methods for treating epilepsy. Hypnotherapy was recently introduced in Jordan, and is conducted mainly by Iraqi doctors who moved to Jordan because of war. Many believe that anxiolytic herbs should be administered to patients following an epileptic attack. These findings suggest the influence of traditional medicine, but also reflect the lack of public awareness of epilepsy. This view is sup-
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ported by the well-recognized influence of traditional medicine on the public’s perception of epilepsy in China [23]. Beliefs regarding causes of epilepsy and preferred treatment modalities are important factors influencing the outcome of epilepsy programs. In India, more than half of patients with epilepsy have tried alternative treatment methods, and a few have failed to take their avoided prescribed medications on religious fasting days [24]. In our study, the group was, perhaps understandably, less well informed about the limitations (or misconceptions) of the role of a religious healer/place in the management of persons with a history of epilepsy. Nearly a quarter of respondents seemed to prefer such a setting for treatment of epilepsy. A strong belief in the use of herbs and religious rituals for the prevention and treatment of epilepsy has been reported among the literate urban public in Ghana [25] and rural Tanzania [26]. In many traditional communities, perhaps in Jordan also, the care of people with epilepsy is the prerogative of the traditional healer. As modern care has yet to flourish in many communities around the world, traditional forms of health care are the only sources available to people with epilepsy. Although traditional healing does not ‘‘cure’’ people with epilepsy, there is evidence that traditional healing rituals are the best in providing psychological comfort [27]. Recognizing patients’ beliefs in the face of suffering is an important factor in health care practice [28]. A recent study of South Asian communities in the United Kingdom found that more than half of responders believed their epileptic illness was fate, or the will of God, or a punishment for sins of a past life [29]. Health care professionals also should be aware of the belief systems of these patients and understand the modalities of treatments in common use. Although such treatments might potentially compete with modern health care, they are used as an adjunct rather than a substitute. The context of cultural competence and the related importance of religious diversity, drawing attention to some of the positive and negative effects of spiritual and religious engagement and healing, have been reviewed [30]. It is also known that when a racial/ethnic and/or cultural group has had a troubled history with modern medicine; pursuit of religious therapies may express mistrust and even fear of physicians. Thus, an understanding of the cultural variations of spiritual and religious systems constitutes a critical component of culturally competent care [31]. Clinical dilemmas may result from misunderstanding what constitutes good care, the patient’s best interest, and competent decision making. One of the best known examples is described in Ann Fadiman’s extended case study, The Spirit Catches You, and You Fall Down, which describes how a Hmong family’s understanding of their child’s epilepsy is related to a religiously related explanation of soul loss [32]. In conclusion, the general public in Jordan appears reasonably well informed about aspects of epilepsy, but misunderstanding and misinformation also prevail. Knowledge appears to be influenced by sociodemographic factors
353
in the predicted directions, but some deviation from this general pattern should be further explored to clarify whether these findings are by chance or represent some meaningful differences. The results of our study will add to the overall picture and help to identify further requirements for intervention studies. Public health education through media or school health education programs is needed to further improve knowledge about epilepsy in Jordan. Further research is needed to assess the success of the intervention. 4.1. Limitations of the study More than 80% of the sample surveyed were young adults (18–39 years old) and had more than 12 years of education. The proportion of the population below 15 years of age is 37.8%, whereas those 65 years and older constitute 3.5% of the population. The demographic structure of the Jordanian population as of 2003 reveals that the largest proportion of the population is between 15 and 65 years [33]. Few individuals chose not to respond, and most of them were elderly. About a third of the respondents in this study were employed in health-related occupations; however, they had no role in providing health care to patients and their work involved mainly adjunct health services such as management and laboratory work. These variables need to be considered when drawing conclusions about the public’s knowledge of epilepsy management in Jordan. Further research using a multistage area probability sampling design is needed to accommodate these limitations. Acknowledgment The authors thank Dr. Seamus Cassidy, Royal College of Surgeons in Ireland/Medical University of Bahrain, for reviewing the article. References [1] Bradley P, Lindsay B. Specialist epilepsy nurses for treating epilepsy. Cochrane Database Syst Rev 2001;4:CD001907. [2] Lim SH, Pan A. Knowledge, attitudes, and perceptions of epilepsy in Asia: toward a uniform study protocol. Epilepsia 2005;46(Suppl. 1): 48–9. [3] Jacoby A, Snape D, Baker GA. Epilepsy and social identity: the stigma of a chronic neurological disorder. Lancet Neurol 2005;4:171–8. [4] Spatt J, Bauer G, Baumgartner C, et al. for the Austrian Section of the International League Against Epilepsy. Predictors for negative attitudes toward subjects with epilepsy: a representative survey in the general public in Austria. Epilepsia 2005;46:736–42. [5] DiIorio CA, Kobau R, Holden EW, et al. Developing a measure to assess attitudes toward epilepsy in the US population. Epilepsy Behav 2004;5:965–75. [6] Galva˜o DF, Agra CG, Agra CG; Antoˆnio RF, Vaz R. Knowledge and attitudes toward epilepsy among primary, secondary and tertiary level teachers. Arq Neuro Psiquiatr 2001;59:712–6. [7] Radhakrishnan K, Pandian JD, Santhoshkumar T, et al. Prevalence, knowledge, attitude, and practice of epilepsy in Kerala, South India. Epilepsia 2000;41:1027–35.
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[8] Ndoye NF, Sow AD, Diop AG, et al. Prevalence of epilepsy, its treatment gap and knowledge, attitude and practice of its population in sub-urban Senegal: an ILAE/IBE/WHO study. Seizure 2005;14:106–11. [9] Bener A, al-Marzooqi FH, Sztriha L. Public awareness and attitudes towards epilepsy in the United Arab Emirates. Seizure 1998;7:219–22. [10] Al-Adawi S, Al-Ismaily S, Martin R, et al. Psychosocial aspects of epilepsy in Oman: attitude of health personnel. Epilepsia 2001;42:1476–81. [11] Baker GA, Jacoby A, Gorry J, Doughty J, Ellina V, for the SIGN Group. Quality of life of people with epilepsy in Iran, the Gulf, and Near East. Epilepsia 2005;46:132–40. [12] Mrabet H, Mrabet A, Zouari B, Ghachem R. Health-related quality of life of people with epilepsy compared with a general reference population: a Tunisian study. Epilepsia 2004;45:838–42. [13] Tandon A, Murray CLJ, Lauer JA, Evans DB. Measuring overall health system: performance for 191 Countries. GPE Discussion Paper Series. WHO Bull 1999:No 30. [14] Choi-Kwon S, Park KA, Lee HJ, et al. Familiarity with, knowledge of, and attitudes toward epilepsy in residents of Seoul, South Korea. Acta Neurol Scand 2004;110:39–45. [15] Young GB, Derry P, Hutchinson I, et al. An epilepsy questionnaire study of knowledge and attitudes in Canadian college students. Epilepsia 2002;43:652–8. [16] Al-Safi SA, Otoom SA. Distribution of blood pressure and heart rate among adults in Jordan: a national survey. Clin Exp Hypertens 2005;27:467–75. [17] Caveness WF, Gallup Jr GH. A survey of public attitudes towards epilepsy in 1979,with an indication of trends over the past thirty years. Epilepsia 1980;21:509–18. [18] Gajjar M, Geva E, Humphries A, Peterson-Badali M, Otsubo H. A new scale to assess culture specific beliefs and attitudes about epilepsy. Epilepsy Behav 2000;1:235–55. [19] Lee TM, Yang SH, Ng PK. Epilepsy in Chinese culture. Am J Chin Med 2001;29:181–4.
[20] Fatovic-Ferencic S, Durrigi MA. The sacred disease and its patron saint. Epilepsy Behav 2001;2:370–3. [21] Devinsky O. Epilepsy patient and family guide. 2nd ed. Philadelphia: Davis; 2002. [22] Kobau R, Price P. Knowledge of epilepsy and familiarity with this disorder in the U.S. population: results from the 2002 Health Style Survey. Epilepsia 2003;44:1449–54. [23] Lai C-W, Lai Y-HC. History of epilepsy in Chinese traditional medicine. Epilepsia 1991;32:299–302. [24] Desai P, Padma MV, Jain S, Maheshwari MC. Knowledge, attitude and practice of epilepsy: experience at a comprehensive rural health services project. Seizure 1998;7:133–8. [25] Nyame PK, Biritwun RB. Epilepsy: knowledge, attitude and practice in literate urban population, Accra, Ghana. West Afr J Med 1997;16:139–45. [26] Rwiza HT, Matuja WB, Kilonzo GP, et al. Knowledge, attitude, and practice toward epilepsy among rural Tanzanian residents. Epilepsia 1993;34:1017–23. [27] Cohen MH. Regulation, religious experience, and epilepsy: a lens on complementary therapies. Epilepsy Behav 2003;4:602–6. [28] Alridge D. Spirituality, healing and medicine. Br J Gen Pract 1991;41:425–7. [29] Ismail H, Wright J, Rhodes P, Small N. Religious beliefs about causes and treatment of epilepsy. Br J Gen Pract 2005;55:26–31. [30] Barness LL, Plotnikoff GA, Fox K, Pendleton S. Spirituality, religion, and pediatrics: interesting worlds of healing. Pediatrics 2000;106(Suppl. 4):899–908. [31] Lukoff D, Lu FG. Cultural competence includes religious and spiritual issues in clinical practice. Psychiatr Ann 1999;29:469–72. [32] Fadiman A. The spirit catches you and you fall down: a Hmong child, her American doctors, and the collision of two cultures. New York: Farrar, Strauss, & Giroux; 1997. [33] World Health Organization country statistics. Available at: http:// www.emro.who.int/jordan/HealthIndicators.htm.
Knowledge of management of epilepsy in young adults in Jordan Sameer A. Otoom
a,*
, Saafan A. Al-Safi b, Reginald P. Sequeira c, Ahmad S. Alkofahi
d
a
d
Royal College of Surgeons in Ireland/Medical University of Bahrain, P.O. Box 15503, Adliya, Bahrain b Department of Clinical Pharmacy, Jordan University of Science and Technology, Irbid, Jordan c Department of Pharmacology and Therapeutics, Arabian Gulf University, Manama, Bahrain Department of Medicinal Chemistry and Pharmacognosy, Jordan University of Science and Technology, Irbid, Jordan Received 23 February 2006; revised 14 June 2006; accepted 16 June 2006 Available online 1 August 2006
Abstract Purpose. Nationwide studies on public knowledge of epilepsy have been undertaken in several countries, but not in Jordan. The purpose of this study was to evaluate knowledge of the management of epilepsy in Jordan. Methods. A cross-sectional study was performed during the period February–June 2005 on 16,044 individuals selected randomly to represent all regions of Jordan. Respondents were interviewed and asked to complete a five-item questionnaire testing their knowledge of the management of epilepsy. Results. Most of the individuals (77.9%) agreed that patients with epilepsy are best treated in a specialized hospital for neurological diseases. Although the largest percentage of the sample (86.7%) agreed that the best person to treat epilepsy is a neurologist, others believed that a hypnotherapist (25.4%) or a religious healer (22.6%) is. As an immediate measure during an attack of epilepsy, most respondents (82.6%) agreed that protecting the patient’s head is most important. During the postseizure period, 45.8% of respondents believed that offering the patient water or a cold or hot drink is appropriate. Two-thirds of the respondents (66.2%) agreed that epilepsy can be treated with drugs. Responses of the participants to the five items significantly differed with respect to age, gender, level of education, and occupation. Conclusion. Jordanians are reasonably well informed about most aspects of the management of epilepsy, but there is still a need for public education about this disorder. Ó 2006 Elsevier Inc. All rights reserved. Keywords: Epilepsy; Management; Knowledge; Jordan
1. Introduction Epilepsy is the most serious neurological disease after stroke, with a prevalence rate of 0.5% [1]. Despite medical treatment, 30 to 40% of people with epilepsy are severely affected and continue to have seizures. Additionally, these patients are exposed to psychosocial difficulties and discrimination [2]. Most people with epilepsy have a social stigma, in part because of the negative attitude of the community toward their condition. This may cause them greater suffering than *
Corresponding author. Fax: +973 17583600. E-mail addresses: [email protected], [email protected] (S.A. Otoom). 1525-5050/$ - see front matter Ó 2006 Elsevier Inc. All rights reserved. doi:10.1016/j.yebeh.2006.06.012
the disease itself or the adverse effects of the medications used to treat this condition [2,3]. Understanding this stigma requires examination of the attitudes of not only the epileptic patients, but also the community [3]. Such an understanding can be attained through knowledge– attitude–practice studies of the public. These studies play an important role in facilitating the integration of persons with epilepsy into their societies and improving their quality of life (QOL). Moreover, these studies have implications in how public education campaigns should be planned and implemented to enhance the understanding of the general public about epilepsy [2]. Substantial research has been done on the public’s knowledge of and attitudes toward epilepsy. These studies reported different findings that are affected by the historic,
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ethnic, and social backgrounds of the country. Knowledge of and attitudes toward epilepsy have been studied in Europe [3,4], North America [5], South America [6], Asia [2,7], and Africa [8]. A cross-sectional study carried out on individuals in Al-Ain City, Dubai, and Sharjah, United Arab Emirates, revealed that the knowledge of, awareness of, and attitudes toward epilepsy in this country were suboptimal compared with Western countries [9]. The other study was performed in Oman, but it assessed physicians’ and not the general public’s awareness of and attitudes toward epilepsy [10]. Two more recent studies have addressed epilepsy-related QOL issues. Analysis of the impact of epilepsy and its treatment on QOL revealed that many respondents feel stigmatized by their epilepsy. There were significant differences between the QOL profiles of respondents in this study and those of an earlier, parallel study in Europe [11]. In contrast, a survey study from Tunisia, although demonstrating impaired QOL, identified different influencing factors [12]. Several possible reasons, such as family support and cultural and religious beliefs, were proposed to explain these cross-cultural differences. Health services in Jordan are delivered through the government, private hospitals, and family/community health centers. Since the early 2000s, the Ministry of Health has been developing a primary health care system through family health centers. Patients with epilepsy are referred from primary health care clinics to hospitals where they are treated in an outpatient clinic [13]. Admission of patients with epilepsy to hospitals is limited and done mainly for patients with status epilepticus. Patients also seek private neurologists for treatment, which may be administered in the clinic or, by referral, in a private hospital. The Jordanian health system operates through health insurance schemes, with 59% provided through private health insurance. Government health insurance schemes are available for government employees (civilian and military) and their families [13]. This large survey study performed during February– June 2005 involved two main objectives. (1) ascertainment of Jordanians’ knowledge of and attitudes toward epilepsy, the results of which will be reported elsewhere; and (2) ascertainment of Jordanians’ knowledge of the management of epilepsy, which is the focus of this article. 2. Methods The questionnaire used for this study was based on published surveys [5,14,15], modified to incorporate sociocultural aspects of Jordan. The questionnaire was translated into Arabic to be congruent with Jordanian dialect. The interviewers were trained to read questionnaire items in the local dialect of spoken Arabic and record the responses accordingly. A rigorous sampling methodology was not applied for reasons related to resources, and the sample consisted primarily of a convenience sample of households that agreed to participate. The sample was selected randomly from all regions of Jordan. Administratively, Jordan is divided into 12 governorates, which are then grouped into three regions: the North region (Irbid, Jarash, Ajloun, and Mafraq), the Central region (Amman, Zarqa, Balqa, and Madaba), and the South region (Karak, Tafielah, Ma’an, and
Aqaba). Each region was divided into blocks, and every other house on that block was sampled. Only one person in the house was allowed to participate in the investigation and was interviewed in the absence of other family members. The length of the interview ranged from 30 to 90 minutes. Participants were asked to complete a questionnaire eliciting sociodemographic data such as age, sex, place of residence, occupation, and level of education and asking five questions on the management of epilepsy. 1. What is the best place to treat an epileptic patient? 2. Who is the best person to treat an epileptic patient? 3. What are the first-aid measures used to rescue a patient during an epileptic seizure? 4. Immediately after a patient resumes consciousness from an attack of epilepsy, what do you do next? 5. Do you think epilepsy is treated with drugs? These questions were answered with the response ‘‘agree,’’ ‘‘disagree,’’ or ‘‘do not know.’’ The participants were given a brief explanation of the purpose of the survey. All items were read to the participants, whereas others (22.3%) completed the questionnaire themselves. The study was supported by the Faculty of Pharmacy, Jordan University of Science and Technology, and was conducted mainly by senior pharmacy students who were trained to use consistent sampling selection criteria. They were also trained to explain, to the respondents, the importance of participating in the study to improve the public’s knowledge about this condition. Health care professionals involved directly in patient care, such as medical doctors, nurses, pharmacists, and paramedics, were excluded.
2.1. Statistics Data are expressed as means ± SD. Statistical analysis was carried out using the v2 test through a computerized SPSS program. P values less than 0.05 were considered statistically significant.
3. Results The total sample for this investigation comprised 16,500 individuals. Of these, 16,044 agreed to participate and complete the questionnaire, yielding a response rate of 97.2%. The numbers (%) of males and females were 8158 (50.8%) and 7886 (49.2%) respectively. Mean age ± SD for the sample was 26.69 ± 10.13 years (range: 18–85 years), and for males and females, 27.52 ± 10.60 and 25.84 ± 9.56 years, respectively. Young adults, 18 to 39 years old, constituted the largest proportion (86.7%) of respondents (Table 1). The majority of the sample (82.2%) had more than 12 years of education. Most of them (61.3%) worked in non-health-related professions. The remaining respondents (38.7%) were not involved directly in health care management; they were employed in professions related to the health sector (e.g., administrators, laboratory technicians). Most of the individuals agreed that a specialized hospital for neurological diseases (77.89%) or a neurology outpatient clinic (72.3%) is the best place to treat patients with epilepsy (Table 2). Only 7.6% thought that these patients should be treated in places offering herbal medications. The largest proportion of the sample (86.7%) agreed that a neurologist is the best person to treat epilepsy (Table 3). Interestingly, 25.4 and 22.6% of the sample thought that hypnotherapists and religious healers, respectively, were
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the best persons to treat patients with epilepsy. These proportions were higher than the proportion of respondents who answered in favor of general practitioners (17.1%). As an immediate measure during an attack of epilepsy, most respondents (82.6%) agreed that protecting the patient’s head is most important (Table 4). A large proportion of the participants also agreed that removal of objects near patients (81.5%) and maintenance of ventilation (81.9%) are important measures. The respondents believed that as a first-aid measure, the patient’s tongue should be pulled (37%) and an object inserted between the teeth (26.4%). In the postseizure period, 45.8% of the sample agreed that the patient should be offered a drink, but disagreed (37.1%) over whether the dose of antiepileptic drug should be increased. As many as 66.2% of the respondents agreed that epilepsy can be treated with drugs, but only 23.4% knew a drug that can be used to treat this condition. Table 1 Demographic characteristics of the sample
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Table 3 Who is the best person who can treat patients with epilepsy? Response
Frequency (%) Agree
Disagree
Don’t know
General practitioner Family physician Neurologist Psychiatrist Acupuncture specialist Hypnotherapist Religious healer
2,749 (17.1) 3,394 (21.2) 13,908 (86.7) 7,144 (44.5) 2,090 (13.0) 1,811 (11.3) 3,618 (22.6)
11,049 (68.9) 10,260 (64.0) 1,053 (6.6) 6,447 (40.2) 9,300 (58.0) 10,155 (63.3) 8,733 (54.4)
2246 2390 1083 2453 4654 4078 3693
(14.0) (14.9) (6.8) (15.3) (29.0) (25.4) (23.0)
The participants with the highest ‘‘agree’’ percentages (those who answered a neurology hospital in question 1, a neurologist in question 2, protecting the patient’s head in question 3, offering the patient a drink in question 4, and drugs can treat epilepsy in question 5) differed with respect to age, gender, level of education, and occupation (v2, P < 0.001) (Table 5).
Parameter
Frequency
Percentage
4. Discussion
Age 18–39 40–59 60–85
13,913 1,914 217
86.7 11.9 1.4
7,886 8,158
49.2 50.8
Education Low (0–6 years) Intermediate (7–12 years) High (>12 years)
625 2,238 13,181
3.9 13.9 82.2
Ethnicity Jordanian Palestinian Syrian Othera
11,173 1,692 1,846 1,333
69.6 10.6 11.5 8.3
6,203 9,841
38.7 61.3
This study investigated the level of knowledge of epilepsy in a random sample of the Jordanian public. Our sample target comprised 16,500 individuals, and the response rate was very high. In general, the Jordanian public was cooperative, especially when the importance of this study was explained to them by the trained interviewers. For the most part, respondents showed an interest in participating once epilepsy was mentioned, as they believe this disease is serious and associated with religious connotations. The translation of the questionnaire items from English to Arabic was also a motivating factor encouraging participation. This high response to participating in studies was demonstrated previously when 14,310 adults agreed to participate in a study about the distribution of blood pressure and heart rate in Jordan [16]. Overall, the study sample appeared generally well informed about this chronic health condition, including their preferences for the best health care provider, the best health care setting, and the first-
Gender Female Male
Occupation Health-related Non-health-related a
Mainly Egyptians and Iraqis.
Table 2 What is the best place to treat patients with epilepsy? Response
Frequency (%) Agree
Disagree
Don’t know
General practitioner outpatient clinic Neurology outpatient clinic Psychiatry outpatient clinic Emergency department in a general hospital Specialized hospital for neurological disorders Specialized hospital for psychiatric disorders Places offering herbal medications Places offering acupuncture treatment Places offering hypnotherapy Religious places of worshipa Othersb
3,596 (22.4) 11,602 (72.3) 6,412 (40.0) 4,180 (26.1) 12,497 (77.9) 6,400 (39.9) 1,225 (7.6) 2,168 (13.5) 1,881 (11.7) 3,759 (23.4) 1,689 (10.5)
9335 (58.2) 2,398 (15.00) 6,693 (41.7) 9,248 (57.6) 1,794 (11.2) 6,825 (42.5) 11,513 (71.8) 8,910 (55.5) 9,314 (58.1) 8,071 (50.3) 6,514 (40.6)
3113 2044 2939 2616 1753 2819 3306 4966 4849 4214 7841
a b
Includes mosques and churches. Includes places where other complementary and alternative medical therapies are provided.
(19.4) (12.7) (18.3) (16.3) (10.9) (17.6) (20.6) (31.0) (30.2) (26.3) (48.9)
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Table 4 What are the first-aid measures used to rescue a patient during an epileptic seizure? Response
Frequency (%) Agree
Disagree
Don’t know
Pulling patient’s tongue Removing objects near patient Protecting patient’s head Maintaining ventilation Transporting patient to hospital Waiting until seizure is over Inserting an object between patient’s teeth Keeping the patient in the lying position Removing objects from patient’s mouth Unbuttoning patient’s shirt Clearing patient’s mouth to allow saliva flow
6721 (41.9) 13,077 (81.5) 13250 (82.6) 13,133 (81.9) 11,457 (71.4) 7,998 (49.9) 8,804 (54.9) 10,698 (66.7) 11,242 (70.1) 5,897 (36.8) 7,536 (47.0)
3411 (21.3) 984 (6.1) 822 (5.1) 700 (4.4) 2512 (15.7) 4938 (30.8) 3005 (18.7) 1416 (8.8) 1576 (9.8) 4497 (28.0) 2477 (15.4)
5912 1983 1972 2211 2075 3108 4235 3930 3226 5650 6031
(36.9) (12.4) (12.3) (13.8) (12.9) (19.4) (26.4) (24.5) (20.1) (35.2) (37.6)
Table 5 Parameters affecting epilepsy knowledge of Jordanian adults aged 18–85 Parameter
Best place to treat epilepsy (neurology hospital)
Best person to treat epilepsy (neurologist)
First-aid measure during attack (protecting patient’s head)
Measure immediately post-seizure (offer the patient water, cold or hot drink)
Epilepsy can be treated by drugs
Gender Male Female
70.9 73.8
85.1 88.3
81.5 83.7
48.6 42.8
66.0 66.4
Agea 18–39 40–5 P60
71.9 75.6 71.4
86.4 88.8 84.3
82.2 85.3 83.0
45.0 50.0 58.1
65.1 73.8 67.7
Occupationa Health-related Non-health-related
76.4 69.6
89.6 84.7
88.3 78.8
46.6 45.1
73.0 61.7
Education levela Low (0–6 years) Intermediate (7–12 years) High (>12 years)
64.8 66.9 73.6
74.6 83.4 87.8
69.6 81.1 83.5
43.0 47.0 45.7
67.74 66 66.52
a
P < 0.00001.
aid measures to be undertaken in case of an epileptic seizure. Factors such as age, gender, level of education, and occupation were predictive of good levels of knowledge about epilepsy. The present study adds to the literature on epilepsy by assessing the perception of knowledge of epilepsy in representative Jordanian adults. This is the first study from Jordan to evaluate the public’s knowledge of epilepsy, although abundant information is already available, mostly from developed countries. Because public knowledge is influenced by sociocultural values and historic perspectives of the region, conclusions based on this study may be applicable to other Middle Eastern countries with shared ethnic, social, and religious values. Cross-cultural studies have found that knowledge of epilepsy is scant and attitudes toward the disorder can vary [17–19]. It has been demonstrated that concurrently held medical (i.e., neurological) and nonmedical (i.e., metaphysical) beliefs and attitudes about epilepsy have led to stigmatizing attitudes toward people with epilepsy in many societies throughout history [20]. Although knowledge of, attitudes toward, and beliefs
about epilepsy have improved worldwide, misperceptions about the disorder persist [21]. In the United States, knowledge about epilepsy was not associated with race/ethnicity, but was associated with sex, age, and education. Those with a college-level education were most likely to be knowledgeable about epilepsy [22]. Consistent with previous studies from the region [9] and South Korea [14], both age and level of education are important factors affecting knowledge of epilepsy; we found that gender and occupation also are important factors predictive of good levels of knowledge about epilepsy in the Jordanian public. Complementary and alternative medicine, such as acupuncture and hypnotherapy, were believed to be preferred methods for treating epilepsy. Hypnotherapy was recently introduced in Jordan, and is conducted mainly by Iraqi doctors who moved to Jordan because of war. Many believe that anxiolytic herbs should be administered to patients following an epileptic attack. These findings suggest the influence of traditional medicine, but also reflect the lack of public awareness of epilepsy. This view is sup-
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ported by the well-recognized influence of traditional medicine on the public’s perception of epilepsy in China [23]. Beliefs regarding causes of epilepsy and preferred treatment modalities are important factors influencing the outcome of epilepsy programs. In India, more than half of patients with epilepsy have tried alternative treatment methods, and a few have failed to take their avoided prescribed medications on religious fasting days [24]. In our study, the group was, perhaps understandably, less well informed about the limitations (or misconceptions) of the role of a religious healer/place in the management of persons with a history of epilepsy. Nearly a quarter of respondents seemed to prefer such a setting for treatment of epilepsy. A strong belief in the use of herbs and religious rituals for the prevention and treatment of epilepsy has been reported among the literate urban public in Ghana [25] and rural Tanzania [26]. In many traditional communities, perhaps in Jordan also, the care of people with epilepsy is the prerogative of the traditional healer. As modern care has yet to flourish in many communities around the world, traditional forms of health care are the only sources available to people with epilepsy. Although traditional healing does not ‘‘cure’’ people with epilepsy, there is evidence that traditional healing rituals are the best in providing psychological comfort [27]. Recognizing patients’ beliefs in the face of suffering is an important factor in health care practice [28]. A recent study of South Asian communities in the United Kingdom found that more than half of responders believed their epileptic illness was fate, or the will of God, or a punishment for sins of a past life [29]. Health care professionals also should be aware of the belief systems of these patients and understand the modalities of treatments in common use. Although such treatments might potentially compete with modern health care, they are used as an adjunct rather than a substitute. The context of cultural competence and the related importance of religious diversity, drawing attention to some of the positive and negative effects of spiritual and religious engagement and healing, have been reviewed [30]. It is also known that when a racial/ethnic and/or cultural group has had a troubled history with modern medicine; pursuit of religious therapies may express mistrust and even fear of physicians. Thus, an understanding of the cultural variations of spiritual and religious systems constitutes a critical component of culturally competent care [31]. Clinical dilemmas may result from misunderstanding what constitutes good care, the patient’s best interest, and competent decision making. One of the best known examples is described in Ann Fadiman’s extended case study, The Spirit Catches You, and You Fall Down, which describes how a Hmong family’s understanding of their child’s epilepsy is related to a religiously related explanation of soul loss [32]. In conclusion, the general public in Jordan appears reasonably well informed about aspects of epilepsy, but misunderstanding and misinformation also prevail. Knowledge appears to be influenced by sociodemographic factors
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in the predicted directions, but some deviation from this general pattern should be further explored to clarify whether these findings are by chance or represent some meaningful differences. The results of our study will add to the overall picture and help to identify further requirements for intervention studies. Public health education through media or school health education programs is needed to further improve knowledge about epilepsy in Jordan. Further research is needed to assess the success of the intervention. 4.1. Limitations of the study More than 80% of the sample surveyed were young adults (18–39 years old) and had more than 12 years of education. The proportion of the population below 15 years of age is 37.8%, whereas those 65 years and older constitute 3.5% of the population. The demographic structure of the Jordanian population as of 2003 reveals that the largest proportion of the population is between 15 and 65 years [33]. Few individuals chose not to respond, and most of them were elderly. About a third of the respondents in this study were employed in health-related occupations; however, they had no role in providing health care to patients and their work involved mainly adjunct health services such as management and laboratory work. These variables need to be considered when drawing conclusions about the public’s knowledge of epilepsy management in Jordan. Further research using a multistage area probability sampling design is needed to accommodate these limitations. Acknowledgment The authors thank Dr. Seamus Cassidy, Royal College of Surgeons in Ireland/Medical University of Bahrain, for reviewing the article. References [1] Bradley P, Lindsay B. Specialist epilepsy nurses for treating epilepsy. Cochrane Database Syst Rev 2001;4:CD001907. [2] Lim SH, Pan A. Knowledge, attitudes, and perceptions of epilepsy in Asia: toward a uniform study protocol. Epilepsia 2005;46(Suppl. 1): 48–9. [3] Jacoby A, Snape D, Baker GA. Epilepsy and social identity: the stigma of a chronic neurological disorder. Lancet Neurol 2005;4:171–8. [4] Spatt J, Bauer G, Baumgartner C, et al. for the Austrian Section of the International League Against Epilepsy. Predictors for negative attitudes toward subjects with epilepsy: a representative survey in the general public in Austria. Epilepsia 2005;46:736–42. [5] DiIorio CA, Kobau R, Holden EW, et al. Developing a measure to assess attitudes toward epilepsy in the US population. Epilepsy Behav 2004;5:965–75. [6] Galva˜o DF, Agra CG, Agra CG; Antoˆnio RF, Vaz R. Knowledge and attitudes toward epilepsy among primary, secondary and tertiary level teachers. Arq Neuro Psiquiatr 2001;59:712–6. [7] Radhakrishnan K, Pandian JD, Santhoshkumar T, et al. Prevalence, knowledge, attitude, and practice of epilepsy in Kerala, South India. Epilepsia 2000;41:1027–35.
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