Epilepsy & Behavior 46 (2015) 140–143
Contents lists available at ScienceDirect
Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
Prevalence of epilepsy, beliefs and attitudes in a rural community in Mexico: A door-to-door survey Daniel San-Juan a,⁎, Susana Alvarado-León b, Jorge Barraza-Díaz c, Ned Merari Davila-Avila d, Axel Hernandez Ruíz e, David J. Anschel f a
Departamento de Investigación Clínica, Instituto Nacional de Neurología y Neurocirugía Manuel Velasco Suárez, Tlalpan, Mexico División de Estudios de Posgrado e Investigación, Universidad Autónoma de Tamaulipas, Facultad de Medicina de Tampico, Tamaulipas, Mexico División de Ciencias de la Salud, Departamento de Ciencias Básicas, Universidad de Monterrey, Monterrey, Mexico d Departamento de Medicina y Ciencias de la Salud, Universidad Autónoma de Sonora, Hermosillo, Mexico e School of Medicine, National Polytechnic Institute, Mexico City, Mexico f Comprehensive Epilepsy Center of Long Island, St. Charles Hospital, 200 Belle Terre Rd., Port Jefferson, NY 11777, USA b c
a r t i c l e
i n f o
Article history: Received 16 January 2015 Revised 8 March 2015 Accepted 21 March 2015 Available online 13 April 2015 Keywords: Epilepsy Perception Rural Traditional medicine Seizures
a b s t r a c t Objective: The study aimed to establish the prevalence of seizure history (SH) and epilepsy in a rural community in Hidalgo, Mexico and determine the patients' beliefs and attitudes towards the disease and its initial medical treatment. Methodology: A transverse, descriptive, door-to-door epidemiological study (April 2011–November 2012) was conducted with 863 inhabitants from Xocotitla, Huejutla, Hidalgo, Mexico (162 housing units). Patients with SH were identified with an adaptation of the WHO protocol for epidemiological studies of neurological diseases. Afterwards, the subjects identified with seizure history (SH) or epilepsy were interviewed with a 20-question Likert type questionnaire regarding the management and belief set of their SH. The interviews were conducted in Spanish and Nahuatl. Results: The prevalence of epilepsy and isolated nonrecurring seizures was 38.2/1000 and 25.4/1000, respectively. Out of the total population of 863 inhabitants, 33/863 were identified with SH: only 39.3% were able to identify an epileptic seizure as such, 48.5% sought medical attention upon the first seizure, 33.3% used a traditional healer, 15.2% took no action, 3% sought a religious representative, 85% lacked any lab analysis, and 60% received no antiepileptic drugs. Only 39% received free local medical attention, 69.7% considered seizures and epilepsy to be a consequence of divine intervention, and 94% reported some type of discrimination. Conclusions: A high prevalence of epilepsy and SH was found in this rural community in Mexico. Divine/religious beliefs, discrimination, scarce access to basic health services and inadequate medical management of epilepsy and SH persist. © 2015 Elsevier Inc. All rights reserved.
1. Introduction Epilepsy is the most common major chronic neurological disorder that affects people of all ages. There are approximately 50 million people affected [1]: 80% in the developing world [2], 60% live undiagnosed or have no access to appropriate treatments and medical services [3], and 5 million in South America and the Caribbean. In Mexico, an estimated 1 to 2 million people live with epilepsy, a prevalence reported between 10.8 and 20/1000 inhabitants [3–6]; however, neither the true urban nor rural prevalence is known. Epilepsy incidence is generally
⁎ Corresponding author at: Av. Insurgentes Sur #3877, Col. La Fama, Tlalpan, D.F. 14269, Mexico. Tel.: +52 5556063822x2527; fax: +52 5556064532. E-mail addresses: [email protected] (D. San-Juan), [email protected] (S. Alvarado-León), [email protected] (J. Barraza-Díaz), [email protected] (N.M. Davila-Avila), [email protected] (A.H. Ruíz).
http://dx.doi.org/10.1016/j.yebeh.2015.03.025 1525-5050/© 2015 Elsevier Inc. All rights reserved.
reported as higher in lower-income economies; while prevalence may or may not be higher, comparisons are limited by lack of door-to-door prevalence studies and variations in the definition of active epilepsy [7]. According to the new Pan American Health Organization strategy and action plan regarding epilepsy, the relationship between healthcare services and traditional attention systems, especially in marginal and indigenous communities, has been underdeveloped, Mexico being a clear example of this shortcoming [8]. In rural areas and different cultures around the world, epilepsy is conceived as a consequence of divine interventions and/or of supernatural causes. Readily accessible traditional medicine and religion play an important role in this perception [9,10]. Amid this context, people tend not to seek initial medical attention with a health-care professional, which delays diagnosis and treatment [3,10–12]. We report a door-to-door study of epidemiology data and a description of rural beliefs in Mexico.
D. San-Juan et al. / Epilepsy & Behavior 46 (2015) 140–143
2. Materials and methods A door-to-door transversal study was conducted from April 2011 to November 2012 in a rural community in Mexico.
141
The instruments were applied by S.A., who daily visited the community and fluently spoke Spanish and Nahuatl. All of the procedures in this study received academic approval from the Ethics in Investigation Committee from the Universidad Autónoma de Tamaulipas and local approval by the rural delegate.
2.1. Description and selection of sample 2.3. Statistical analysis The community of Xocotitla, part of the Huejutla de Reyes municipality, state of Hidalgo, Mexico, was selected for its convenient location and previous experience with providing social service to the community (Fig. 1) [13]. According to the 2010 census conducted by the National Statistics, Geography and Informatics Institute (INEGI), the population included 863 people distributed in 162 low socioeconomic status households, out of which: 30.2% had a dirt floor, 31.5% were constituted by a sole room, 85.2% with a latrine, 91.3% lacked drainage, 29.5% were illiterate, and 1.8% had electricity [13]. Regarding access to health-care services: 83.3% were not entitled to any medical care, and 16.3% had social security (Mexican Institute of Social Security or Institute for Security and Health Services for State Workers) [13]. 2.2. Methods An adult (N18 years old) or the head of 162 households was interviewed; if no one was home, the interviewer returned the next day. Following informed consent, the WHO protocol: Epidemiologic Studies of Neurologic Disorders questionnaire was administered for the identification of neurologic risk factors and epilepsy diagnosis frequency according to the International Classification of Disease, 10th Rev. ICD-10 (G40.0-G40.3 and G40.6-G40.7). Afterwards, the subjects identified with seizure history (SH) or epilepsy were interviewed with a 20-question Likert type questionnaire regarding their treatment and the belief set of their SH. The latter questionnaire provided information with respect to: age at the time of the first epileptic seizure, capacity to identify symptoms, reaction of family members, SH, professional evaluation (lab studies: complete blood count, blood urea nitrogen, creatinine, uric acid, chloride, potassium, sodium, glucose, cholesterol and triglycerides), causal attribution, and discrimination. Epilepsy was defined according to the 2005 Task Force of the International League Against Epilepsy, in which more than two unprovoked seizures with more than 24 h between seizures are required [14]. This questionnaire was validated as a pilot test in 30 subjects from the same rural community [15].
Descriptive statistics were utilized (rates, frequency, and percentages) to characterize the study subjects and to identify the distribution of clinical variables; χ2 with statistical significance of p b 0.05 was used for nonparametric variables (SPSS V. 17.0). The prevalence rates were calculated per 1000 inhabitants. 3. Results All households were queried. Out of the total population of 863 inhabitants, 33 inhabitants with SH were identified. The prevalence rate of epilepsy and isolated nonrecurring seizures were 25.4/1000 and 38.2/1000 inhabitants, respectively. The first seizure presented before the age of 10 years in 81.1% of cases. Regarding kinship, 60.6% of the inhabitants with SH were offspring of the interviewee. Sixty-six percent of the subjects had more than one epileptic seizure (epilepsy). Etiology, age distribution, and usage of lab studies are shown in Table 1. Sixty percent of people with SH received no antiepileptic drug (AED) treatment. Among the 40% who did receive treatment: 92% received it after the first seizure, and 39% acquired it free of charge in the local health-care center. Adherence to treatment was reported in 92.3% of cases. Only 1 patient reported poor adherence to treatment (consumption less than 50% of prescribed AEDs per week) due to lack of resources to acquire it. Hospitalization was required in 9.1% of cases after their first epileptic seizure. Regarding the interviewee or their kin's capacity to identify the signs and symptoms of an epileptic seizure (Table 2), only 39.4% could identify it as such upon its first presentation. Commonly, upon identifying an epileptic seizure, patients were brought to a traditional healer (38.5%), similar to the group in which the epileptic seizure was not identified as such (30%) (p = 0.736). The group in which the family members could not identify the first epileptic seizure as such tended to utilize health services (60%) more than the group that did identify the seizure (30%) (p = 0.045). A single
Fig. 1. Children in the Xocotitla community, Huejutla de los Reyes, Hidalgo, Mexico.
142
D. San-Juan et al. / Epilepsy & Behavior 46 (2015) 140–143
Table 1 Socio-demographic and clinical characteristics from the 33 subjects with seizure history. Variables
N (%) of subjects
Age at the time of the first seizure (years) b1 1–10 11–20 21–30 31–40 N60 Etiology Cryptogenic Infectious Traumatic Other Basic lab and neuroimaging No studies Basic lab studiesa CT scan
8 (24) 11 (33) 6 (18) 3 (9) 4 (12) 1 (4)
a
17 (52) 5 (15) 2 (6) 9 (27) 28 (85) 4 (12) 1 (3)
subject was taken for religious assistance following the first identified seizure; the rest of the subjects (23.1%) took no action, similar to the group which did not identify the seizure (p = 0.654) (Table 2). The seizure was considered a consequence of divine intervention in 69.7% of the cases, and only 30.3% considered it part of a disease. The patients' reaction after the first seizure and their causal attribution is shown in Table 3. The patients who believed the seizure was a medical condition presented to health-care services 90% of the time. From the group considering the seizure a divine punishment, 47.8% sought the help of a traditional healer, and 30.4% presented to their physician. Seventy-six percent of subjects did not hide their condition from their community; nevertheless, 94% reported having experienced some kind of discrimination related to their SH and/or epilepsy.
4. Discussion Our results show the high prevalence of SH and epilepsy in this rural community from Hidalgo, Mexico. Lifetime prevalence in South American and the Caribbean, according to a compilation of 32 studies, is on average 17.8 per 1000 (range: 6–43.2) [8,16], broadly similar throughout the world [17]. In Mexico, only two rural epidemiological studies have been conducted: one from 1992 in Naonilco, Veracruz with a prevalence rate of 11/1000 inhabitants and the other from Comalcalco, Tabasco, with a prevalence rate of 20/1000 inhabitants [4]. Neither of these studies addressed the cultural aspects and/or belief set related to epilepsy. The identification of signs and symptoms of epileptic seizures and the action taken after the seizure coincide with that reported in other studies [12,18]. The present study population did not have access to diagnostic methods in 80% of the cases. Electroencephalogram availability was limited, and video-EEG is essentially not available [8].
Table 2 Difference between the reaction of the patients or family member to seek health assistance depends on their capacity to identify the first epileptic seizure.
Sought a physician Sought a traditional healer Sought a religious representative No action a
Based on χ2, p b (0.05).
Reaction after first seizure
Sought a physician Sought a traditional healer Sought a religious representative No action
Abbreviation: CT, computer tomography. a Basic lab studies: complete blood count, blood urea nitrogen, creatinine, uric acid, chloride, potassium, sodium, glucose, cholesterol, and triglycerides.
Reaction after seizure
Table 3 Patient reactions after first seizure and their causal attribution.
Identification of first seizure, n (%) Yes
No
pa
Total
4 (30.8) 5 (38.5) 1 (7.7) 3 (23.1)
12 (60) 6 (30) 0 (0) 2 (10)
0.045 0.736 1.000 0.654
16 (48.5) 11 (33.3) 1 (3) 5 (15.2)
Causal attribution, n (%) Disease
Divine punishment
pa
Total
9 (90) 0 (0) 0 (0) 1 (10)
7 (30.4) 11 (47.8) 1 (4.3) 4 (17.4)
0.617 1.000 1.000 0.180
16 (48.5) 11 (33.3) 1 (3) 5 (15.2)
Based on χ2, p b (0.05).
In Mexico, CT scans are often used with their relatively low cost and capacity to detect evident lesions, such as those of calcified neurocysticercosis [3,17]. Although MRI has been recommended as the gold standard to identify epilepsy's most common etiologies [8], in South America and the Caribbean, neuroimaging equipment is scarce and generally concentrated in the private sector, being financially unattainable for the general population [8]. The lack of proper diagnostic evaluation is a limitation of our study. Most countries in South America and the Caribbean utilize four AEDs: phenobarbital, phenytoin, carbamazepine and valproic acid. However, these tend to be available only at secondary and tertiary centers [8], which is reflected in our study through the limited access to AEDs. Reports indicate that in developing countries, three-fourths of patients with epilepsy are not able to receive an adequate treatment [2,3,18]. According to our results, many patients did not seek medical assistance from a physician (51.5%). This can be explained by the widespread belief that epilepsy can be cured by alternative and/or traditional healing methods [9]. Since many patients are not seen by a physician after the first seizure, prompt diagnosis and treatment is impeded. The benefits of early diagnosis and treatment include less cognitive deterioration in young children and adolescents [9]. Further, treatment with AEDs renders up to a 70% rate of seizure control in people recently diagnosed with epilepsy. After 2 to 5 years of successful treatment, medication can be suspended in up to 70% of children and 60% of adults without relapses [2]. Several studies report that 50% of people with SH or epilepsy have experienced some type of social morbidity associated with their ailment, differing from the high percentage reported in our study (94%). In many cases, the social consequences of epilepsy have more of a detrimental impact on life quality than the seizures themselves [19]. Thirty-four percent of countries in South America and the Caribbean report having national programs for epilepsy [8]. Some of the key problems with the provision of health-care services to people with epilepsy are the limitations in the identification, management, and follow-ups in primary health care. Many countries lack intervention protocols or have obsolete ones; the relationship between primary health-care and neurology services is insufficient or null [8]. People with epilepsy in rural contexts still tend to be taken primarily to traditional healers. Most of the Latin-American cultures and societies have recognized epilepsy as a unique entity and have treated it according to their cultural, magical, and natural beliefs. For example, the Tzetal Mayans in Mexico attribute epilepsy to a constant fight between spirits; the Kamayur'a natives from Brazil believe epilepsy is caused by the spirit of the armadillo; and according to the Chipayans in Bolivia, it is originated from witchcraft. The treatment consists of the use of plants, animals, and insects believed to have an anticonvulsant effect or blamed for a seizure-like condition [20]. A strategy and action plan organized by the Pan American Health Organization (OPS) has pointed out that one of its objectives is to execute an essential intervention package for people with epilepsy within primary health care, ensuring access to basic medication as well as information for self-care. An emphasis has been placed upon “indigenous populations” [8], for which epidemiologic data are essential.
D. San-Juan et al. / Epilepsy & Behavior 46 (2015) 140–143
5. Conclusions We confirm that a high prevalence of SH and epilepsy exists in this rural community in Hidalgo, Mexico. Divine/religious beliefs, discrimination, scarce access to basic health care, and inadequate medical management of seizures and epilepsy persist.
Acknowledgments None. Conflict of interest None.
References [1] Ngugi AK, Bottomley C, Kleinschmidt I, Sander JW, Newton CR. Estimation of the burden of active and life-time epilepsy: a metaanalytic approach. Epilepsia 2010; 51:883–90. [2] World Health Organization. Epilepsy: aetiology, epidemiology and prognosis. WHO Fact Sheet, No. 999; 2009[http://www.who.int/mediacentre/factsheets/fs999/en/, last accessed on March 2015]. [3] Acevedo C, Miranda C, Campos M, Caraballo R, Carpio A, Cuadra L, et al. OPS/OMS. Informe sobre la epilepsia en Latinoamérica. Editado en Panamá; 2008 2–85 [http://www.ibe-epilepsy.org/downloads/Latin%20American%20Regional%20Report% 20Spanish.pdf, last accessed on March 2015]. [4] Donnadieu RF. Epidemiologia de la epilepsia. In: Donnadieu RF, Aparicio RJ, Vanegas AM, Madrid SH, editors. Epilepsia Programa Prioritario de Epilepsia Sector Salud. México: Secretaria de Salud; 2011. p. 23–4. [5] Estrada CM, Soler HE, Gómez MM, Molar CF, Sainz VL, González CH. Epilepsia y su revisión en primer nivel de atención. Rev Med Inst Mex Seguro Soc 2010;48:189–92.
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[6] García-Pedroza F, Millán R, Peñaloza Y. Epidemiología clínica de la epilepsia. Rev Mex Neuroci 2010;11:82–102. [7] Beghi E, Hesdorffer D. Prevalence of epilepsy—an unknown quantity. Epilepsia 2014; 55:963–7. [8] Organización Panamericana de la Salud, Organización Mundial de la Salud. Liga Internacional Contra la Epilepsia–Buró Internacional para la Epilepsia. Estrategia y Plan de Acción sobre la Epilepsia. Washington (DC), Estados Unidos: OPS; 2011[http://www.paho.org/hq/dmdocuments/epilepsia%20doc.pdf, last accessed on March 2015]. [9] Winkler SA, Mayer M, Ombay M, Mathias B, Schmutzhard E, Jilek-Aall L. Attitudes towards African traditional medicine and Christians spiritual healing regarding treatment of epilepsy in a rural community of northern Tanzania. Afr J Tradit Complement Altern Med 2010;7:162–70. [10] Robert AS, Samden DL, Josemir WAS. The treatment of epilepsy in developing countries: where do we go from here? Bull World Health Organ 2001;79:344–51. [11] Radhakrishnan K. Challenges in the management of epilepsy in resource-poor countries. Rev Neurol 2009;5:323–30. [12] Baskind R, Birbeck G. Epilepsy care in Zambia: a study of traditional healers. Epilepsia 2005;46:1121–6. [13] National Statistics, Geography and Informatics Institute (INEGI). http://www.inegi. org.mx/est/contenidos/proyectos/ccpv/cpv2010/; 2010. [last accessed on March 2015]. [14] Fisher RS, van Emde Boas W, Blume W, Elger C, Genton P, Lee P, et al. Epileptic seizures and epilepsy: definitions proposed by the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE). Epilepsia 2005;46:470–2. [15] Arribas M. Diseño y validación de cuestionarios. Matronas Prof 2004;5:23–9. [16] Burneo JG, Tellez-Zenteno J, Wiebe S. Understanding the burden of epilepsy in Latin America: a systematic review of its prevalence and incidence. Epilepsy Res 2005;66: 63–74. [17] Bell GS, Neligan A, Sander JW. An unknown quantity—the worldwide prevalence of epilepsy. Epilepsia 2014;55:958–62. [18] Mbuba C, Ngugi A, Newton C, Carter J. The epilepsy treatment gap in developing countries: a systematic review of the magnitude, causes, and intervention strategies. Epilepsia 2008;49:1491–503. [19] Al-Adawi S, Al-Ismaily S, Martin R, Al-Naamani A, Al-Riyamy K, Al-Maskari M, et al. Psychosocial aspects of epilepsy in Oman: attitude of health personnel. Epilepsia 2001;42:1476–81. [20] Carod-Artal FJ, Vazquez-Cabrera CB. An anthropological study about epilepsy in native tribes from Central and South America. Epilepsia 2007;48:886–93.
Contents lists available at ScienceDirect
Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
Prevalence of epilepsy, beliefs and attitudes in a rural community in Mexico: A door-to-door survey Daniel San-Juan a,⁎, Susana Alvarado-León b, Jorge Barraza-Díaz c, Ned Merari Davila-Avila d, Axel Hernandez Ruíz e, David J. Anschel f a
Departamento de Investigación Clínica, Instituto Nacional de Neurología y Neurocirugía Manuel Velasco Suárez, Tlalpan, Mexico División de Estudios de Posgrado e Investigación, Universidad Autónoma de Tamaulipas, Facultad de Medicina de Tampico, Tamaulipas, Mexico División de Ciencias de la Salud, Departamento de Ciencias Básicas, Universidad de Monterrey, Monterrey, Mexico d Departamento de Medicina y Ciencias de la Salud, Universidad Autónoma de Sonora, Hermosillo, Mexico e School of Medicine, National Polytechnic Institute, Mexico City, Mexico f Comprehensive Epilepsy Center of Long Island, St. Charles Hospital, 200 Belle Terre Rd., Port Jefferson, NY 11777, USA b c
a r t i c l e
i n f o
Article history: Received 16 January 2015 Revised 8 March 2015 Accepted 21 March 2015 Available online 13 April 2015 Keywords: Epilepsy Perception Rural Traditional medicine Seizures
a b s t r a c t Objective: The study aimed to establish the prevalence of seizure history (SH) and epilepsy in a rural community in Hidalgo, Mexico and determine the patients' beliefs and attitudes towards the disease and its initial medical treatment. Methodology: A transverse, descriptive, door-to-door epidemiological study (April 2011–November 2012) was conducted with 863 inhabitants from Xocotitla, Huejutla, Hidalgo, Mexico (162 housing units). Patients with SH were identified with an adaptation of the WHO protocol for epidemiological studies of neurological diseases. Afterwards, the subjects identified with seizure history (SH) or epilepsy were interviewed with a 20-question Likert type questionnaire regarding the management and belief set of their SH. The interviews were conducted in Spanish and Nahuatl. Results: The prevalence of epilepsy and isolated nonrecurring seizures was 38.2/1000 and 25.4/1000, respectively. Out of the total population of 863 inhabitants, 33/863 were identified with SH: only 39.3% were able to identify an epileptic seizure as such, 48.5% sought medical attention upon the first seizure, 33.3% used a traditional healer, 15.2% took no action, 3% sought a religious representative, 85% lacked any lab analysis, and 60% received no antiepileptic drugs. Only 39% received free local medical attention, 69.7% considered seizures and epilepsy to be a consequence of divine intervention, and 94% reported some type of discrimination. Conclusions: A high prevalence of epilepsy and SH was found in this rural community in Mexico. Divine/religious beliefs, discrimination, scarce access to basic health services and inadequate medical management of epilepsy and SH persist. © 2015 Elsevier Inc. All rights reserved.
1. Introduction Epilepsy is the most common major chronic neurological disorder that affects people of all ages. There are approximately 50 million people affected [1]: 80% in the developing world [2], 60% live undiagnosed or have no access to appropriate treatments and medical services [3], and 5 million in South America and the Caribbean. In Mexico, an estimated 1 to 2 million people live with epilepsy, a prevalence reported between 10.8 and 20/1000 inhabitants [3–6]; however, neither the true urban nor rural prevalence is known. Epilepsy incidence is generally
⁎ Corresponding author at: Av. Insurgentes Sur #3877, Col. La Fama, Tlalpan, D.F. 14269, Mexico. Tel.: +52 5556063822x2527; fax: +52 5556064532. E-mail addresses: [email protected] (D. San-Juan), [email protected] (S. Alvarado-León), [email protected] (J. Barraza-Díaz), [email protected] (N.M. Davila-Avila), [email protected] (A.H. Ruíz).
http://dx.doi.org/10.1016/j.yebeh.2015.03.025 1525-5050/© 2015 Elsevier Inc. All rights reserved.
reported as higher in lower-income economies; while prevalence may or may not be higher, comparisons are limited by lack of door-to-door prevalence studies and variations in the definition of active epilepsy [7]. According to the new Pan American Health Organization strategy and action plan regarding epilepsy, the relationship between healthcare services and traditional attention systems, especially in marginal and indigenous communities, has been underdeveloped, Mexico being a clear example of this shortcoming [8]. In rural areas and different cultures around the world, epilepsy is conceived as a consequence of divine interventions and/or of supernatural causes. Readily accessible traditional medicine and religion play an important role in this perception [9,10]. Amid this context, people tend not to seek initial medical attention with a health-care professional, which delays diagnosis and treatment [3,10–12]. We report a door-to-door study of epidemiology data and a description of rural beliefs in Mexico.
D. San-Juan et al. / Epilepsy & Behavior 46 (2015) 140–143
2. Materials and methods A door-to-door transversal study was conducted from April 2011 to November 2012 in a rural community in Mexico.
141
The instruments were applied by S.A., who daily visited the community and fluently spoke Spanish and Nahuatl. All of the procedures in this study received academic approval from the Ethics in Investigation Committee from the Universidad Autónoma de Tamaulipas and local approval by the rural delegate.
2.1. Description and selection of sample 2.3. Statistical analysis The community of Xocotitla, part of the Huejutla de Reyes municipality, state of Hidalgo, Mexico, was selected for its convenient location and previous experience with providing social service to the community (Fig. 1) [13]. According to the 2010 census conducted by the National Statistics, Geography and Informatics Institute (INEGI), the population included 863 people distributed in 162 low socioeconomic status households, out of which: 30.2% had a dirt floor, 31.5% were constituted by a sole room, 85.2% with a latrine, 91.3% lacked drainage, 29.5% were illiterate, and 1.8% had electricity [13]. Regarding access to health-care services: 83.3% were not entitled to any medical care, and 16.3% had social security (Mexican Institute of Social Security or Institute for Security and Health Services for State Workers) [13]. 2.2. Methods An adult (N18 years old) or the head of 162 households was interviewed; if no one was home, the interviewer returned the next day. Following informed consent, the WHO protocol: Epidemiologic Studies of Neurologic Disorders questionnaire was administered for the identification of neurologic risk factors and epilepsy diagnosis frequency according to the International Classification of Disease, 10th Rev. ICD-10 (G40.0-G40.3 and G40.6-G40.7). Afterwards, the subjects identified with seizure history (SH) or epilepsy were interviewed with a 20-question Likert type questionnaire regarding their treatment and the belief set of their SH. The latter questionnaire provided information with respect to: age at the time of the first epileptic seizure, capacity to identify symptoms, reaction of family members, SH, professional evaluation (lab studies: complete blood count, blood urea nitrogen, creatinine, uric acid, chloride, potassium, sodium, glucose, cholesterol and triglycerides), causal attribution, and discrimination. Epilepsy was defined according to the 2005 Task Force of the International League Against Epilepsy, in which more than two unprovoked seizures with more than 24 h between seizures are required [14]. This questionnaire was validated as a pilot test in 30 subjects from the same rural community [15].
Descriptive statistics were utilized (rates, frequency, and percentages) to characterize the study subjects and to identify the distribution of clinical variables; χ2 with statistical significance of p b 0.05 was used for nonparametric variables (SPSS V. 17.0). The prevalence rates were calculated per 1000 inhabitants. 3. Results All households were queried. Out of the total population of 863 inhabitants, 33 inhabitants with SH were identified. The prevalence rate of epilepsy and isolated nonrecurring seizures were 25.4/1000 and 38.2/1000 inhabitants, respectively. The first seizure presented before the age of 10 years in 81.1% of cases. Regarding kinship, 60.6% of the inhabitants with SH were offspring of the interviewee. Sixty-six percent of the subjects had more than one epileptic seizure (epilepsy). Etiology, age distribution, and usage of lab studies are shown in Table 1. Sixty percent of people with SH received no antiepileptic drug (AED) treatment. Among the 40% who did receive treatment: 92% received it after the first seizure, and 39% acquired it free of charge in the local health-care center. Adherence to treatment was reported in 92.3% of cases. Only 1 patient reported poor adherence to treatment (consumption less than 50% of prescribed AEDs per week) due to lack of resources to acquire it. Hospitalization was required in 9.1% of cases after their first epileptic seizure. Regarding the interviewee or their kin's capacity to identify the signs and symptoms of an epileptic seizure (Table 2), only 39.4% could identify it as such upon its first presentation. Commonly, upon identifying an epileptic seizure, patients were brought to a traditional healer (38.5%), similar to the group in which the epileptic seizure was not identified as such (30%) (p = 0.736). The group in which the family members could not identify the first epileptic seizure as such tended to utilize health services (60%) more than the group that did identify the seizure (30%) (p = 0.045). A single
Fig. 1. Children in the Xocotitla community, Huejutla de los Reyes, Hidalgo, Mexico.
142
D. San-Juan et al. / Epilepsy & Behavior 46 (2015) 140–143
Table 1 Socio-demographic and clinical characteristics from the 33 subjects with seizure history. Variables
N (%) of subjects
Age at the time of the first seizure (years) b1 1–10 11–20 21–30 31–40 N60 Etiology Cryptogenic Infectious Traumatic Other Basic lab and neuroimaging No studies Basic lab studiesa CT scan
8 (24) 11 (33) 6 (18) 3 (9) 4 (12) 1 (4)
a
17 (52) 5 (15) 2 (6) 9 (27) 28 (85) 4 (12) 1 (3)
subject was taken for religious assistance following the first identified seizure; the rest of the subjects (23.1%) took no action, similar to the group which did not identify the seizure (p = 0.654) (Table 2). The seizure was considered a consequence of divine intervention in 69.7% of the cases, and only 30.3% considered it part of a disease. The patients' reaction after the first seizure and their causal attribution is shown in Table 3. The patients who believed the seizure was a medical condition presented to health-care services 90% of the time. From the group considering the seizure a divine punishment, 47.8% sought the help of a traditional healer, and 30.4% presented to their physician. Seventy-six percent of subjects did not hide their condition from their community; nevertheless, 94% reported having experienced some kind of discrimination related to their SH and/or epilepsy.
4. Discussion Our results show the high prevalence of SH and epilepsy in this rural community from Hidalgo, Mexico. Lifetime prevalence in South American and the Caribbean, according to a compilation of 32 studies, is on average 17.8 per 1000 (range: 6–43.2) [8,16], broadly similar throughout the world [17]. In Mexico, only two rural epidemiological studies have been conducted: one from 1992 in Naonilco, Veracruz with a prevalence rate of 11/1000 inhabitants and the other from Comalcalco, Tabasco, with a prevalence rate of 20/1000 inhabitants [4]. Neither of these studies addressed the cultural aspects and/or belief set related to epilepsy. The identification of signs and symptoms of epileptic seizures and the action taken after the seizure coincide with that reported in other studies [12,18]. The present study population did not have access to diagnostic methods in 80% of the cases. Electroencephalogram availability was limited, and video-EEG is essentially not available [8].
Table 2 Difference between the reaction of the patients or family member to seek health assistance depends on their capacity to identify the first epileptic seizure.
Sought a physician Sought a traditional healer Sought a religious representative No action a
Based on χ2, p b (0.05).
Reaction after first seizure
Sought a physician Sought a traditional healer Sought a religious representative No action
Abbreviation: CT, computer tomography. a Basic lab studies: complete blood count, blood urea nitrogen, creatinine, uric acid, chloride, potassium, sodium, glucose, cholesterol, and triglycerides.
Reaction after seizure
Table 3 Patient reactions after first seizure and their causal attribution.
Identification of first seizure, n (%) Yes
No
pa
Total
4 (30.8) 5 (38.5) 1 (7.7) 3 (23.1)
12 (60) 6 (30) 0 (0) 2 (10)
0.045 0.736 1.000 0.654
16 (48.5) 11 (33.3) 1 (3) 5 (15.2)
Causal attribution, n (%) Disease
Divine punishment
pa
Total
9 (90) 0 (0) 0 (0) 1 (10)
7 (30.4) 11 (47.8) 1 (4.3) 4 (17.4)
0.617 1.000 1.000 0.180
16 (48.5) 11 (33.3) 1 (3) 5 (15.2)
Based on χ2, p b (0.05).
In Mexico, CT scans are often used with their relatively low cost and capacity to detect evident lesions, such as those of calcified neurocysticercosis [3,17]. Although MRI has been recommended as the gold standard to identify epilepsy's most common etiologies [8], in South America and the Caribbean, neuroimaging equipment is scarce and generally concentrated in the private sector, being financially unattainable for the general population [8]. The lack of proper diagnostic evaluation is a limitation of our study. Most countries in South America and the Caribbean utilize four AEDs: phenobarbital, phenytoin, carbamazepine and valproic acid. However, these tend to be available only at secondary and tertiary centers [8], which is reflected in our study through the limited access to AEDs. Reports indicate that in developing countries, three-fourths of patients with epilepsy are not able to receive an adequate treatment [2,3,18]. According to our results, many patients did not seek medical assistance from a physician (51.5%). This can be explained by the widespread belief that epilepsy can be cured by alternative and/or traditional healing methods [9]. Since many patients are not seen by a physician after the first seizure, prompt diagnosis and treatment is impeded. The benefits of early diagnosis and treatment include less cognitive deterioration in young children and adolescents [9]. Further, treatment with AEDs renders up to a 70% rate of seizure control in people recently diagnosed with epilepsy. After 2 to 5 years of successful treatment, medication can be suspended in up to 70% of children and 60% of adults without relapses [2]. Several studies report that 50% of people with SH or epilepsy have experienced some type of social morbidity associated with their ailment, differing from the high percentage reported in our study (94%). In many cases, the social consequences of epilepsy have more of a detrimental impact on life quality than the seizures themselves [19]. Thirty-four percent of countries in South America and the Caribbean report having national programs for epilepsy [8]. Some of the key problems with the provision of health-care services to people with epilepsy are the limitations in the identification, management, and follow-ups in primary health care. Many countries lack intervention protocols or have obsolete ones; the relationship between primary health-care and neurology services is insufficient or null [8]. People with epilepsy in rural contexts still tend to be taken primarily to traditional healers. Most of the Latin-American cultures and societies have recognized epilepsy as a unique entity and have treated it according to their cultural, magical, and natural beliefs. For example, the Tzetal Mayans in Mexico attribute epilepsy to a constant fight between spirits; the Kamayur'a natives from Brazil believe epilepsy is caused by the spirit of the armadillo; and according to the Chipayans in Bolivia, it is originated from witchcraft. The treatment consists of the use of plants, animals, and insects believed to have an anticonvulsant effect or blamed for a seizure-like condition [20]. A strategy and action plan organized by the Pan American Health Organization (OPS) has pointed out that one of its objectives is to execute an essential intervention package for people with epilepsy within primary health care, ensuring access to basic medication as well as information for self-care. An emphasis has been placed upon “indigenous populations” [8], for which epidemiologic data are essential.
D. San-Juan et al. / Epilepsy & Behavior 46 (2015) 140–143
5. Conclusions We confirm that a high prevalence of SH and epilepsy exists in this rural community in Hidalgo, Mexico. Divine/religious beliefs, discrimination, scarce access to basic health care, and inadequate medical management of seizures and epilepsy persist.
Acknowledgments None. Conflict of interest None.
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