The descriptive epidemiology of epilepsy-a review.

Stigma related to chronic health conditions such as HIV/AIDS, leprosy, tuberculosis, mental illness and epilepsy is a global phenomenon with a severe impact on individuals and their families, and on the effectiveness of public health programmes. To compare stigma measurement in different disciplines, a literature review was conducted. References were obtained through a search of literature databases and through examining relevant bibliographies. Sixty-three papers were selected that addressed the issue of measurement of stigma or related constructs and that contained a sample of the instrument or items used. Five unpublished studies were also included in the review. The aspects of health-related stigma used for assessment can be grouped in five categories. First, the experience of actual discrimination and/or participation restrictions on the part of the person affected; second, attitudes towards the people affected; third, perceived or felt stigma; fourth, self or internalized stigma; and fifth, discriminatory and stigmatizing practices in (health) services, legislation, media and educational materials. Within each of these areas, different research methods have been used, including questionnaires, qualitative methods, indicators and scales. The characteristics of the instruments considered most promising are described and compared. The purpose of stigma assessment is to increase our understanding of stigma and its determinants and dynamics, to determine its extent or severity in a given setting or target group and to monitor changes in stigma over time. The conclusions from this review are that (a) the consequences of stigma are remarkably similar in different health conditions, cultures and public health programmes; (b) many instruments have been developed to assess the intensity and qualities of stigma, but often these have been condition-specific; and (c) development of generic instruments to assess health-related stigma may be possible. To achieve this aim, existing instruments should be further validated, developed or adapted for generic use, where possible.

Measuring health-related stigma--a literature review.

Summary Epilepsy is the most common serious neurological disorder worldwide, affecting about 50 million people. 1 In most people with epilepsy, the disorder is clinically benign. However, because of the stigma associated with having epilepsy, which is common to many cultures, there can be a negative effect on the social identity of people with the disorder, particularly for those living in resource-poor countries. In this paper, we present general theories of stigma, as well as those specific to chronic illness. We relate these theories to the stigma associated with epilepsy throughout history and across cultures. We review research on the relation between stigma and the overall quality of life of people with epilepsy. Finally, we address reduction of the stigma.

https://www.thelancet.com/pdfs/journals/laneur/PIIS1474-4422(05)01014-8.pdf

Epilepsy and social identity: the stigma of a chronic neurological disorder.

This article is a summary of a workshop held by the ILAE concerning the issue of the epilepsy treatment gap in developing countries. The gap is defined in terms of those people with epilepsy who are not being appropriately treated and is the result of an array of medical, political, social, economic, and cultural factors. The situation regarding the treatment gap for various countries is reviewed, along with some of its causes. Although the overall gap is estimated to be large, a number of recent projects and interventions have been effective in delivering appropriate treatment to people with epilepsy in underresourced countries of the developing world. It is hoped that these may be transferable elsewhere and that, combined with the ILAE/IBE/WHO Global Campaign against Epilepsy and increased support from the worldwide epilepsy community, the treatment gap will begin to be bridged.

https://onlinelibrary.wiley.com/doi/pdf/10.1046/j.1528-1157.2001.32800.x

The treatment gap in epilepsy: the current situation and ways forward.

https://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(12)61381-6.pdf

Epilepsy in poor regions of the world

Summary: Purpose: To determine comparative prevalence rates, demographics, phenomenology, seizure classification, presumptive etiology, treatment status, and selected socioan-thropological aspects of epilepsy in Pakistan and Turkey.



Methods: A population-based, cross-cultural comparative study of epilepsy was designed with identical protocols to be performed simultaneously in Pakistan and Turkey. The essential feature of the design was an unselected population, with reference to their previous medical contact, and use of standardized International Community-Based Epilepsy Research Group (ICBERG) protocols to assess cross-cultural differences.



Results: In all, 24,130 persons in Pakistan and 11,497 persons in Turkey (both urban and rural, of all ages and both sexes) were studied. The crude prevalence rate of epilepsy was 9.98 in 1,000 in Pakistan and 7.0 in 1,000 in Turkey (14.8 in 1,000 in rural and 7.4 in 1,000 in urban areas of Pakistan; 8.8 in 1,000 in rural and 4.5 in 1,000 in urban areas of Turkey). In both countries, epilepsy was twice as prevalent in rural areas than in urban areas. Mean age of onset of epilepsy was 13.3 years in Pakistan and 12.9 years in Turkey. Overall frequency of seizure types was similar in both countries, with no urban/rural differences. The frequency distribution in Pakistan and Turkey, respectively, was as follows: generalized tonic-clonic, 80.5 and 65.4%; simple partial, 5 and 7.4%; complex partial, 5 and 12.3%; generalized absence, 0.8 and 4.9%; tonic and atonic, 5.8 and 3.7% each; and myoclonic, 5.8 and 1.2%. A putative cause for the epilepsy could be attributed in 38.4% of cases in Pakistan and 35.7% of cases in Turkey. Only 3% of patients in Pakistan, but 71% of patients in Turkey, believed that their illness was due to supernatural causes. The treatment status was very poor. In Pakistan, 27.5% of people with epilepsy in urban areas and 1.9% of people with epilepsy in rural areas were receiving antiepileptic drugs (AEDs) at the time of the survey. In, Turkey 30% of patients were receiving AEDs (marginally higher in rural areas).



Conclusions: The prevalence of epilepsy is slightly higher in Pakistan than in Turkey; some marginal differences in age and sex distribution, are not statistically significant. The results are comparable to those in Ecuador, where the same epidemiologic protocol was used.

https://onlinelibrary.wiley.com/doi/pdf/10.1111/j.1528-1157.1997.tb01242.x

Comparative epidemiology of epilepsy in Pakistan and Turkey : Population-based studies using identical protocols

Summary: Purpose: To assess the stigmatization and psycho-social problems of persons with epilepsy in Pakistan.



Methods: A population-based, cross-sectional epidemiologic study of 241 persons with epilepsy identified from an at-risk population of 24,130 individuals (64.7% from urban and 35.3% from rural areas). Of these patients, 77% suffered from recurrent non-febrile generalized convulsions. We evaluated degree of stigmatizations (i.e., avoidance by friends, neighbors, and others), and the effect of epilepsy on other psychosocial aspects (e.g., marriage), and also the relationships between gender and level of education of the patients, and stigmatization.



Results: Patients with epilepsy in Pakistan do not appear to be highly stigmatized, but their education and grades are affected by the disorder. They have difficulty performing activities of daily living and find it hard to make decisions about whether to marry or to have children. Women believed that they were more dangerous to others, received less help from their families, and, more frequently than men, encouraged others to avoid them. Women were also more likely than men to express the belief that people with epilepsy should not marry, but in fact, women more frequently married as compared men—a fact influenced by social and cultural pressures, including pressure from family, because it is nearly always the responsibility of the parents to arrange the marriage of a daughter. Influence of education indicates that people with epilepsy who have higher education, as compared with those with less education, had fewer children, were less often avoided by their classmates and neighbors, had fewer problems with plans for education, less frequently encouraged others to avoid them, were more frequently married, and believed that they were more dangerous to others. Most people believed that their conditions had a physical basis; only 3.1% attributed their epilepsy to supernatural causes.



Conclusions: Stigmatization regarding epilepsy has not been proven to be an important feature in the culture of Pakistan because none of the observations are statistically significant as per P-value.

Epilepsy in Pakistan: Stigma and Psychosocial Problems. A Population-Based Epidemiologic Study

The basic belief-system in Islam includes the following concepts: There is one Creator of the Universe (God; “Allah” in Arabic). From among the humans, the Creator chooses suitable people to act as messengers (Prophets) who enact and exemplify the Divine Commandments in the cultural context. The divine Message is bestowed upon the prophets in the form of inspirations and orders, which on compilation have produced The Holy Books viz. The Torah, The Bible and The Quran. According to The Quran, Abraham was the first Muslim (“Muslim” meaning a person who submits and obeys totally to the commands of the Creator). The other prophets according to The Quran are being Moses, Christ, Soloman, Jacob, Joseph and many others (p.b.u.h). It is obligatory that all the prophets and The Holy Books must remain sacred for all Muslims. The Holy Book bestowed upon Prophet Muhammad is The Holy Quran in which any word, which is equivalent of ‘Epilepsy’, is not written anywhere. It should be noted that The Holy Quran is not an inventory. It provides general guidelines/orders for everyday life, refers to the prophets before the Prophet Muhammad (p.b.u.h), and refers to a number of varied subjects like mathematics, biology, human embryology, geology, oceanography, astrology, physics, chemistry, sociology, judiciary, philosophy and many others. In Hadith there is one recorded case of a female with epilepsy.1

/pdf/perception-of-epilepsy-in-muslim-history-with-current-52pkl2ronu.pdf

Perception of epilepsy in Muslim history; with current scenario

Results: Of the 560 respondents, the 535 correctly filled questionnaires were analyzed. The teachers were from government (83.2%) and private (16.8%) schools; females 61.5% and males 38.5%. The meanage of the respondents was 37.0+9.2 years: females 35.3+9 years and males 39.7+9 years. Education level were: master 40.2%, graduate 37.2%, higher-secondary certificate 12.9% and secondary certificate 9.7%. Thirty-four percent “had met” and 27.1% “were acquainted with” persons with epilepsy. For the prevalence, the responses were: “less common” (54.8%), “uncommon” (27.9%) and “very common” (11.8%). For the age of epilepsy sufferers, the responses were: “any age” (69.0%) and “young age” (17.6%). The responses for aetiology were: “stress and tension” (37.4%), “abnormal electrical discharges in brain” (55.0%) and “supernatural/possessed/magic” (0.6%). Epilepsy was considered: a harmless disease (34.4%), not a disease (14.0%), hereditary (21.5%) and transmissible (10.1%). For epilepsy semiology, the responses were: “unconsciousness/convulsions” (75.3%), “disconnection/behaviourchange” (7.3%) and both (14.0%). For first-aid measure, the responses were: “lay in bed” (49.9%) “smell a shoe” (15.7%) and “put a spoon in the mouth” (21.1%). For effectiveness of treatment, the responses were: effective up to 90% (39.6%), success up to 50% (22.6%) and uncertain (20.8%). For the availability of AEDs, the responses were: “most AEDs available in Pakistan” (43.6%), “one or two AEDs available” (28.2%) and “unaware” (21.9%). Very few (10.8%) said they could name an AED, but only 8.2% named it correctly. The attitude to schooling were: “persons with epilepsy can study in normal schools” (75.1%), “cannot study in normal schools” (10.7%) and “can study in normal schools but in a separate classroom” (8.0%). Most (49.5%) believed that persons with epilepsy could be a successful schoolteacher or a sportsperson. For the impact of the society, the responses were: “negative impact” (47.9%), and “no impact” (37.4%). As for marriage/having-children, the responses were: “should get married” (73.8%), “should have children” (70.3%). The mean KAP-score was 55.6%. The responses were independent of age and gender, but they were influenced by educational level. Conclusion: There were many misunderstandings about epilepsy among schoolteachers in Pakistan. However, the attitude of the teachers towards epilepsy was generally positive. Majority believed that students with epilepsy should be in normal schools.

/pdf/survey-of-knowledge-attitude-and-practice-of-epilepsy-among-25x8n2619g.pdf

Survey of knowledge, attitude and practice of epilepsy among 535 schoolteachers in five cities of Pakistan

Objectives: To identify and see impact of coexisting depression in diagnosed cases of migraine. Design: Hospital-based case-control study. Setting: Department of Neurology, Jinnah Postgraduate Medical Centre Karachi. Patients and Methods: Patients of all ages and both sexes attending neurology OPD at JPMC between October 1998 to October 1999 were included. International Headache Society criteria for diagnosis of migraine and Urdu version of Hospital Anxiety and Depression Scale for diagnosis of depression was used. Migraine with Depression cases (MWD) were compared with Migraine without depression as controls (MC). Main-Outcome-Measures: Duration and frequency of migraine, co-morbidity with depression. Results: Out of 100 migraineurs, 40 were MWD and 40 MC were taken from the remaining 60 migraineurs. Among MWD and MC females were common: 72%(29) and 78%(31) respectively. Of the females MWD, most of the patients belonged to the age group 31-40years; 52%(15) patients, compared to MC where age group 21-30 years; 58%(18) was common. Among the males, maximum number of migraineurs belonged to the age groups of 22-30 years for both MWD and MC i.e. 46%(05) and 56%(05) respectively. Fifty percent of MWD reported having migraine attacks for 10 or more years, whereas only 18% of MC had the similar duration. (P-value =<0.01). Ninety percent (n=36) of MWD reported maximal disability during the headache as compared to the 62.5%(25) of MC. 62.5%(25) of MWD had an average frequency of 4 or more attacks per month compare to 55%(22) of MC having once per month or less. (P-value =0.001). Conclusions: Migraineurs with long history and high frequency might benefit from psychiatric evaluation and addition of antidepressant drugs to their therapeutic regimen.

Syed Wasim Akhtar

Papers

Comparative epidemiology of epilepsy in Pakistan and Turkey : Population-based studies using identical protocols

Epilepsy in Pakistan: Stigma and Psychosocial Problems. A Population-Based Epidemiologic Study

Perception of epilepsy in Muslim history; with current scenario

Survey of knowledge, attitude and practice of epilepsy among 535 schoolteachers in five cities of Pakistan

Migraine: comorbidity with depression