Year : 2007 | Volume
: 10 | Issue : 3 | Page : 160--164
Knowledge, attitude, and practices with regard to epilepsy in rural north-west India
RK Sureka, Rohit Sureka
Department of Neurology, SMS Medical College, Jaipur, India
R K Sureka
47, Sanjay Marg, Hathroi Scheme, Jaipur - 302 001, Rajasthan
Objectives: To study the knowledge, attitudes, and beliefs about the causes and the treatment of epilepsy in rural North West India in the year 2000 and, again after 4 years, to study the effects of health education and regular treatment on the same parameters. Materials and Methods: The study was conducted twice, in 2000 and 2004. A structured questionnaire was used to collect information on demographic profile, seizure characteristics, knowledge regarding cause of epilepsy, details of alternative forms of treatment taken, and attitude towards medical treatment. Results: Generalized seizures were the most common (84%) type of seizure, followed by partial seizures (9.4%). The most common antiepileptic drug used was phenytoin, followed by phenobarbitone. Ayurvedic treatment was the most common alternative therapy used. Evil spirits were believed to be the cause of the disease by 26.4% of the patients in 2000, but only in 11.2% in 2004. Faith in the curative power of drugs increased from 18% in 2000 to 59% in the year 2004. Polytherapy was being resorted to by 60% of patients in 2000; this was reduced to 45.6% in 2004. Conclusion: Positive attitude changes over the four years from 2000 to 2004 confirm the need for effective health education that can remove misconcepts regarding disease.
|How to cite this article:|
Sureka R K, Sureka R. Knowledge, attitude, and practices with regard to epilepsy in rural north-west India.Ann Indian Acad Neurol 2007;10:160-164
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Sureka R K, Sureka R. Knowledge, attitude, and practices with regard to epilepsy in rural north-west India. Ann Indian Acad Neurol [serial online] 2007 [cited 2020 Sep 21 ];10:160-164
Available from: http://www.annalsofian.org/text.asp?2007/10/3/160/34795
Patients' beliefs determine their response to an illness and the strategies they use to cope with it. Learning patients' beliefs and attitude is an important early step in improving patient care.  With regard to the rural areas in India, there is a relative lack of information on the knowledge, attitudes, and beliefs of patients and their relatives about causes and treatment of epilepsy. Several earlier studies ,, in underdeveloped countries have shown that there is a strong belief that supernatural powers and spirits are the cause of epilepsy. Successful treatment of epilepsy in rural areas is influenced, to a large extent, by the prevailing beliefs and attitudes. In a developing country like India there is a scarcity of medical manpower, and most patients in rural areas are managed in an environment where specialized investigations or personnel are not available.
The major reasons for poor compliance with treatment include failure to understand the principles of drug treatment, the cost factor, and erratic drug supplies. Other factors that interfere with effective treatment are the attitudes of the patients and their family members towards the disease, the influence of 'dharamgurus' and quacks, concomitant traditional treatment, and the fear of the side effects of drugs. 
We undertook this study in a rural health centre of Rajasthan to study the attitudes, beliefs, and knowledge of patients regarding the causes and treatment of epilepsy. We also aimed to study the effect of regular health education and supervised treatment (over a period of four years) on the above issues.
Materials and Methods
Patients included in the study were those who were attending the comprehensive rural health project for treatment of epilepsy at Ratannagar of district Churu in Rajasthan, which is about 200 Kms away from Jaipur. Patients of all age-groups, suffering from epilepsy but without any other major physical or psychiatric disorders, were interviewed in the local language (Hindi) by one of the authors, who also filled up a structured questionnaire. In those patients, and in children, who were not able to provide complete details, the parents were also interviewed.
The questionnaire focused on collecting information on demographic characteristics, seizure characteristics, knowledge regarding cause of epilepsy, details about alternative forms of treatment taken, and attitudes towards current medical treatment. All subjects were seen monthly by a team of neurologists. Free medication for every month was provided and health education was imparted through written material and classes. There was a video presentation every three months by a team of health personnel. Every patient was given a book in Hindi-'Mirgi Rog Ko Janeya' ([Knowing Epilepsy)-on epilepsy and a chart detailing the do's and don'ts of epilepsy. Health personnel ensured that the charts and the message in the video presentation were clearly understood by all, giving detailed explanations in the local language and in Hindi whenever necessary. For all patients 'epilepsy cards' were maintained, in which was recorded all details regarding treatment received, efficacy of treatment, adverse effects of drugs, compliance with treatment, and precipitating factors for the disease. Data for the study was collected from these records also.
The study was first conducted in 2000, when data on 212 patients was compiled. Four years later, in 2004, the study was repeated on the same group of patients; however,32 subjects were lost to follow-up and out of the original 212 data could be collected for only 180 subjects.
In the study, 50 of the 212 subjects were children less than 12 years of age; in these cases the parents were also interviewed. The demographic profile is shown in [Table 1]. The mean age of the study subjects was 30 years (range 5-50 years) and about 90% of patients belonged to the lower socioeconomic classes, with an income of less than Rs. 3,000/- per month. [Table 2] shows the clinical characteristics of the patients. Generalized tonic-clonic seizure (GTCS) was the most common type of epilepsy; it was noted in 178 (84%) of the patients. The next most common form was partial seizure. The commonest cause for seizure recurrence was noncompliance with treatment, followed by intercurrent illness; no precipitating factor was found in one-third of the patients. In 2000, 15% of the patients reported experiencing intolerable adverse effects due to drug therapy, whereas by 2004 only 9% complained of this. Polytherapy was given in 60% of cases in 2000 but was reduced to 45.6% in 2004 by shifting patients to monotherapy whereever possible. Data collected in 2004 clearly showed that seizures were controlled with proper medical treatment in 60.6% of patients.
The common beliefs regarding the cause of epilepsy and attitudes towards alternative treatment methods are shown in [Table 3]. In the first study, about 23.5% of the patients believed that epilepsy was a disease of the brain; when the study was repeated in 2004, 57% held that belief. The prevalence of the belief that epilepsy is due to evil spirits was reduced to less than half, from 26.4% to 11.2%. The ignorance regarding the disease was also reduced to less than 10% in 2004 vs 27.4% in 2000.
About half of the patients had tried alternative treatments; Ayurveda, followed by sorcery, was most popular. After four years, the number of patients taking alternative therapy for seizure disorders had been reduced to about one-third of what was seen in 2000. The attitudes of patients towards modern medical treatment are shown in [Table 3]. In the study conducted in 2000, only 18% of the patients expected the treatment to be curative, whereas by 2004 almost 59% of the patients expected a cure. In 2000, about 73% of patient said that they did not take medicines during their religious fast, but four years later the percentage of such patients was reduced by half.
Whereas only 32% of the patients in 2000 had believed that missing a dose of drug would result in a fit or would render previous treatment ineffective, by 2004 about 70% held the same belief. The study of 2000 had shown that about 37% of the patients did not attend the clinic regularly, but by 2004 87.5% of the patients were found to be attending the clinic regularly every month.
The patients in our study had chronic, poorly controlled epilepsy. They were predominantly young adults and children, with a majority of the patients belonging to the lower socioeconomic classes. GTCS was the most common seizure type, followed by partial seizure.
Beliefs regarding cause of epilepsy
The various beliefs prevalent in African countries attribute both natural and supernatural causes for epilepsy. ,, The natural causes include poverty, weakness, and extremes of heat and cold; the supernatural cause being the anger of ancestral spirits. On comparing the results of our pair of studies, conducted in 2000 and 2004, changes in the beliefs and attitudes of the people over time could be clearly seen. The belief that epilepsy is a type of disease of the brain increased from 23.5% to 57% and ignorance regarding the disease was also reduced to less than 10% over the 4-year period. This is perhaps due to increased levels of education and the awareness imparted through the rural epilepsy clinic. The results were similar to that found in the study done by Mirnics et al.  in Hungary, which examined the changes in public attitudes towards epilepsy through two surveys conducted in 1994 and 2000.
The belief that epilepsy is due to evil spirits was present in about 26.4% of patients in our study conducted in 2000, which was similar to the findings of the studies conducted by Radhakrishnan et al. in Kerala, South India  and by Birbeck et al.  among Zambian teachers. After 4 years, the percentage of patients having this belief reduced to 11.2%; patients had apparently recognized the ineffectiveness of sorcery and voodoo as a form of treatment for epilepsy.
Alternative treatments tried by patients
Management of epilepsy is quite different in developing countries as compared to that in the developed countries. In most developing countries, seizures may not be considered as an emergency that warrants immediate medical attention. Most of the initial consultations are with traditional healers. A study from an urban centre found that 40% of the patients opted for alternative treatment, with 28.8% preferring sorcery or voodoo.  In Nigeria, although almost 90% of the patients believed that doctors can treat epilepsy effectively, 33% still preferred to combine medical treatment with sorcery or native treatment. 
In our study, among the patients who tried out alternative treatment, the most common recourse was to Ayurveda (in 47.4%), followed by sorcery, homeopathy, and naturopathy. Benefits from these treatments were seen in only 10% of the patients. A large number of patients opted for Ayurvedic medicines because most Indians have an abiding faith in the indigenous Ayurvedic form of treatment.  Another reason for the popularity of Ayurvedic medicines is the easy accessibility to practitioners of the system, especially in rural India. The belief of people, regarding the role evil spirits in the causation of diseases had changed over the past four years. Accordingly, the percentage of patients who underwent sorcery to treat epilepsy had reduced from 31.6% to 10%.
Patients' attitudes regarding current treatment
In third world countries like India, the major impediments to effective treatment are the unreliable supply of drugs, the lack of patient and family education, and poor compliance on the part of patients. In our study conducted in 2000, about 71% of the patients believed that drugs could control seizures but would not cure the disease; by 2004, 59% of the patients were of the belief that drugs would cure the disease and another 32% of patients were of the opinion that drugs could control the seizures. These results were similar to that in the study conducted by Kin et al. on the positive trends in public attitudes towards epilepsy after a public education campaign among rural Koreans.  In our study in 2000, the majority of the patients believed that missing a dose of their antiepileptic drug would not cause any harm and, therefore, they were casual about taking their medicines regularly; consequently, they used to have a recurrence of their seizure. In 2004, however, we found that about 70% of the patients had started believing that missing a dose would result in a fit and so their compliance with treatment improved. Most of our patients (63%) in 2004 linked the timing of medication with some form of activity such as bed- or mealtime.  This could be because most of our patients were on phenytoin, which has a simple dosing schedule. In 2000 we had found that most of the patients depended on their family members to remind them to take their medicines every day, but in 2004 62% patients had started taking their medicines on their own, which again demontrates the change in their attitude towards treatment and also the necessity of imparting health education to both the patient and the family to achieve good drug compliance. 
In the multicultural society of India, religious customs greatly influence the life of people. Muslims observe a strict fast in the holy month of Ramzan and do not take anything during the daytime. Similarly, fasts are very popular among the Hindus and the Jains. It was seen in 2000 that only 27% patients used to take medicines on the day of the fast, but the percentage increased to 46% in 2004, indicating the impact of the health education sessions. Regular supply of drugs and constant motivation is necessary in the rural areas of developing countries because of the low socioeconomic status of the population, low levels of education, and the lack of awareness about the disease.  Our study conducted in 2000 showed that about 52% of patients would stop treatment if free medicines were not supplied to them. Only 46% patients were ready to purchase medicines if they were not supplied free of cost. The percentage of patients who were willing to buy their medicines almost doubled to 90% in the second phase of the study in 2004. The importance of regular and free supply of drugs in rural areas has also been shown by a study conducted by Desai, Padma, et al.  The majority of our patients visited their doctors regularly as they were provided a monthly supply of medicines; a substantial increase in the defaulter rate was seen in the patients who were irregular in their visits to the dispensary.
From the two studies conducted, it was clear that regular follow-up and good compliance with treatment has increased the percentage of those who had achieved good control of their seizures-from 17.4% to 60%-which is a remarkable improvement. Moreover through this epilepsy clinic, we were able to reduce the number of patients on polytherapy from 60% to 45% This has helped reduce the number of those reporting intolerable side effects from 15% to 9% and, thereby, ensured good compliance with treatment. 
Rural patients have many misconcepts regarding the cause of epilepsy and the efficacy of the different forms of treatment. Culture-specific characteristics can cause poor compliance with treatment.  There are significant background effects of demographic variables; differences by age, education, residence, and family status were found. Significant positive attitude changes from 2000 to 2004 confirm the need for, and potentialities of, education of the patient, his family, and the public.  Finally, we stress the importance of ensuring regular drug supplies to ensure better patient care in the rural areas of India.
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