Review Article
Epilepsy: Some controversies, some knowledge and some experience from Cambodia Chamroeun Hun1,2, Tola Hok1,3, Sina Ros1,2,4, Samleng Chan1,2,4, Devender Bhalla1 1 4
Cambodian Society of Neurology, 2Department of Neurology, Calmette Hospital, 3Department of Neurology, Kossamak Hospital, Department of Neurology, University of Health Sciences, Phnom Penh, Cambodia
Abstract
Address for correspondence: Dr. Devender Bhalla, Cambodian Society of Neurology, (An Entity Approved by the Government of Cambodia), 21 A, Street 261, Sangkat Teuk La Ak II, Khan Toul Kork, Phnom Penh, Cambodia. E‑mail: [email protected] Received : 02-12-2014 Review completed : 02-12-2014 Accepted : 05-12-2014
Epilepsy-related health outcomes remain unacceptably low in much of the developing world. According to us, it is because of the failure since long to see, and address, epilepsy beyond its preset conventional image. The objective of this paper was to highlight the presence, and influence, of these conventional practices and also to demonstrate what happened when a bold unconventional approach to address epilepsy was taken in Cambodia. Data are taken from existing published literature on epilepsy as well as our field experience during several population-based surveys conducted in Cambodia. We complimented this with our knowledge gained over this long period. It is demonstrated that epilepsy is far more important in Asia that it is currently considered to be, and also vis-à-vis other geographic regions. Pregnancy and birth-related factors carry far higher odds for epilepsy than several “highly vocal” infections. A refocus in epilepsy is required to help move from its traditional negative image to an image where epilepsy is considered a “positivelooking” disorder that is full of “opportunities;” such as availability of safe effective inexpensive treatment, etc. Stigma is a two-side entity (i.e., it is present, and it is influential), and diligence should be therefore practiced before using the stigma label. Nevertheless, psychosocial aspects shouldn’t be limited to stigma or Jacoby stigma scale alone. Quality of life is a subjective phenomenon, and patients should determine directly what affects them. It is highly desirable that if we want to find newer answers to old problems in epilepsy, we need to shed our conventional approach and preset conclusions. We should choose to move toward “opportunities” visibly present in epilepsy. Our Cambodian experience demonstrates more intimately that opportunities do get identified when preset conclusions are questioned, and an approach that goes beyond expected and by default is taken. Key words: Asia, Cambodia, epidemiology, epilepsy, prevalence, risk factors
Access this article online Quick Response Code:
Website: www.neurologyindia.com PMID: *** DOI: 10.4103/0028-3886.149376
606
Introduction Epilepsy is a major neurological disorder. Epilepsy‑related health outcomes remain unacceptably low in much of the developing world.[1] According to us, although hypothetically, it is because of the failure since long to see, and address, epilepsy beyond its preset conventional image. Many examples exist, (a) although it is often
Neurology India | Nov-Dec 2014 | Vol 62 | Issue 6
Hun, et al.: Epilepsy in Cambodia
reported that epilepsy is highly incident in Africa, the fact that all of these studies were retrospective or cross‑sectional and were conducted in biased populations, is not appreciated in the literature;[2] (b) Jacoby stigma scale (JSS) is often used to estimate “presence” of stigma but whether or not this stigma is “influential” (influences a person’s daily life and choices) is rarely looked at.[3] As a result, same result is obtained irrespective of the different particularities in the populations and populations continue to get labelized as being stigmatized. Many more such examples exist. The objective of this paper is to highlight the presence, and influence, of these conventional practices and also to demonstrate what happened when a bold unconventional approach to address epilepsy was taken in Cambodia.
What Did We Learn and Propose Choosing Asia is a necessity While looking at the epilepsy literature of the last few decades, Africa has visibly been the most frequent by‑default choice to undertake research activities.[2] Very recently, novel observations have been made that clearly indicate that for numerous reasons, Asia needs far more attention than it has been allocated to since long.[2] By taking an unconventional choice of Asia, our novel Cambodian activities have contributed to bridge this epilepsy literature gap in Asia.[4] Focus on correct risk factors and benefit as a result Factors other than infections have clearly far greater odds for epilepsy [Table 1], yet for some reasons, infections receive far more respect and reportage as epilepsy causes and risk factors. In Cambodia, factors related to pregnancy and birth (PREB) had highest odds for epilepsy that, in fact, re‑validate the 1954 concept of “reproductive causality” of epilepsy.[5] Focusing on PREB factors is beneficial for epilepsy for many reasons: [5] (a) Integration of epilepsy into already existing antenatal care (ANC) programs is at least theoretically feasible; (b) if integrated, this would mean epilepsy would become a “global initiative” since almost all countries have ANC programs; (c) epilepsy would benefit from resources of the ANC programs; (d) integration of epilepsy into ANC programs would concurrently increase the political interest level for the benefit of epilepsy; (e) such an integration can possibly be cost‑effective also. If this is done, then it is possible to prevent up to 40% of epilepsy cases, as we estimated in Cambodia.[5] Table 2 shows how barriers to the coverage gap are same for epilepsy and ANC. Don’t be too quick to using a stigma label Are those countries that have been reported as being stigmatized really stigmatized? As an example, in two Neurology India | Nov-Dec 2014 | Vol 62 | Issue 6
Table 1: Odds of epilepsy due to various risk factors Long or difficult birth (8.5 odds) in Cambodia[5] Eventful pregnancy (gestational hypertension, vaginal bleeding) of subject’s mother (8.6 odds) in Cambodia[5] Difficulty feeding, crying or breathing after birth (10.2 odds) in SSA[6] Neurocysticercosis (2.8 odds) in Latin America[7] Onchocerciasis (2.4 odds) in SSA[8] Malaria (3.9 odds) in SSA[9] Toxoplasmosis (4.8 odds published and 2.25 currently unpublished), worldwide[10] Toxocariasis (1.92 odds), worldwide[11] SSA ‑ Sub‑saharan africa
Table 2: Some factors of treatment gap and APNC
Treatment gap
APNC
Distance Lack of transport Interruption in daily activities No one to accompany Cost Time factor (e.g., walking long miles) Inadequate trained staff Laziness To come too many times Unavailability of medicines
Distance Lack of transport Interruption in daily activities No one to accompany Cost Time factor (e.g., walking long miles) Inadequate trained staff Laziness To come too many times Fear of animals on the way Shyness (embarrassment) among older or very young women Simple tools and solutions already available Complete mismatch between “what exists”“what is offered” and “what patient/public wants”
Common ground Foremost cause
APNC ‑ Ante and postnatal care
different treatment surveys conducted in Mali in 2002[12] and 2012,[13] the authors respectively stated “of these, 74% completed the 1st year (therapeutic) follow‑up” and “approximately 80% of the patients took the drug as prescribed.” Now, the question arises if people are stigmatized then why are they completing their therapeutic follow‑ups and taking drugs as prescribed? And more so accept these services from foreigners? Similar is the story in Zambia [14] where traditional healers have no issues with referring their patients to hospitals and in Ethiopia[15] where stigma was not even in the list of reasons for loss of therapeutic follow‑ups. In Cambodia as well,[3] for 72% patients the foremost coping strategy was to look for treatment while isolating oneself was a coping strategy for only 1% patient; only 6% and 8% patients reportedly concealed or denied epilepsy; supernatural origin of epilepsy was reportedly 0%; social support was 90%; for 84% patients epilepsy was treatable by modern medicine; mean self‑esteem was 7.5 (range: 0–8), etc., The treatment acceptance was 100%, and treatment compliance was never 95%.[16] 607
Hun, et al.: Epilepsy in Cambodia
Now, the question arises why there are positive attitudes, beliefs, and practices in populations that are concluded to be stigmatized by the JSS?[17] According to us, there are two explanations. Our first rather hypothetical reason is that for some reason JSS tends to give the same conclusion (i.e. stigmatize populations) every time it is used, irrespective of the reality in that population.[3] Its effect is, in fact, compounded by what we give as our second possible reason. Secondly, calling one population as stigmatized is a too precious conclusion to rely solely on three small questions of JSS. While addressing psychosocial profile of epilepsy, it is important to not just take the stigma as the only parameter but to also “cross‑check” this stigma through other parameters.[3] In Cambodia,[3] we not only looked at stigma but also did “cross‑checking” of this stigma with other important parameters such as determining what their self‑esteem is? Were they discriminated and in which domain? Whether there was any social support for patients? What were their coping strategies? Was there any fear related to epilepsy along with degree and origin of fear? Was there ever any denial of epilepsy? Was there ever concealment of epilepsy? This approach allowed us to obtain a complete picture of what is there in the people’s mind, something that can’t be achieved using JSS alone. Let patients decide what affects their quality of life Another conventional practice is to determine the quality of life (QOL) by professionals and not by the affected patients. QOL is a subjective phenomenon, and it is the patient who should determine what affects him/her and not professionals. This is the reason why studies may frequently replicate similar results[18,19] although a different point‑of‑view may also exist.[3] In Cambodia,[3] we used a direct method of determining what affects patients’ QOL by giving them a list of many (~50) possible factors and asked them to choose what affects their QOL. This is possibly the reason that factors such as postictal headache, anger, no nearby health facility, uncertainty of next seizure, bad taste of tablets, bed wetting, fear of injury, worry if seizures can ever be controlled, etc., were found to be relevant factors for QOL by patients. It is obvious that most such factors are rarely discussed in the epilepsy QOL literature.[3] These are important factors though; for instance, research has shown that there is a clear pathogenic relationship between headache and epilepsy.[20] To date, neither International Headache Society nor International League against Epilepsy mentioned headache/migraine as a sole ictal epileptic manifestation. Additionally, QOL is not necessarily limited to seizure frequency or severity alone, most major feature of epilepsy.[21] Determine what “people expect” with respect to treatment delivery Several treatment programs have been tested in various populations; and common observations can be 608
deduced easily from them. In Ethiopia,[22] Cameroon[23] and elsewhere, while it is possible to attract people toward taking initial treatments through primary‑care initiatives, the attrition rate is always high. This is not unexpected if patients have to walk 20 miles to receive a consultation and treatment, every time, even in such “primary‑care arrangements.”[24] In Ethiopia, it was also seen that attrition happens for exactly the same reasons due to which the treatment gap is originally high, e.g. distance to cover.[15] This shows a gap between “what is offered” and “what is expected” by the population.[15] Additionally, patients benefit if there is a periodic contact between service provider (SP) and patient; that may build confidence and perhaps protect against premature rupture of treatment as well.[24,25] This was seen in Tanzania also where nearly 3/4th patients who were initially treated by physician had died when these were revisited after a certain period. Most of this mortality was epilepsy‑related due to stoppage or irregular drug supplies.[26] This shows the extent to which a continuous contact and utilization of a local resource (e.g. local SP) is crucial. We devised a novel award‑winning approach called “domestic health visiting, (DHV)” through primary health center staff in ongoing projects in Cambodia and Laos.[16,27] Advantages of this approach are already discussed in details.[16] It is also demonstrated that how DHV can be generalized into a complete multi‑disease system of healthcare service delivery [Figure 1]. Project epilepsy as a positive‑looking disorder Should epilepsy be always seen through its negative connotations? Could epilepsy be promoted as a positive‑looking constructive disorder? • Highly effective and safe treatment is available since 100 years • Epilepsy is a visible disorder; >70% have generalized seizures that is, seizures can’t be hidden even if desired • Basic treatment is inexpensive in many countries
Figure 1: Possibility of how a domestic health visiting can be generalized to address several purposes at 1 time. GDHV - Generalist domestic health visitors, SDHV - Specialist domestic health visitors
Neurology India | Nov-Dec 2014 | Vol 62 | Issue 6
Hun, et al.: Epilepsy in Cambodia
• • • •
Treatment is simple, a tablet per day by mouth for a large number of patients Epilepsy is preventable without the need to create specific set‑ups Epilepsy can be decentralized to primary‑care level Its diagnosis doesn’t require sophisticated tools or huge innovations.
Conclusion It is highly desirable that a conventional approach toward epilepsy is shed, and we choose to move toward “opportunities” that are visibly present in epilepsy, rather than continue endlessly to focus on its negative aspects alone. Our Cambodian experience has also helped us to understand more intimately that opportunities do get identified when preset conclusions are questioned, and an approach that goes beyond expected and by default is taken.
References 1. Kvalsund MP, Birbeck GL. Epilepsy care challenges in developing countries. Curr Opin Neurol 2012;25:179‑86. 2. Bhalla D, Tchalla AE, Marin B, Ngoungou EB, Tan CT, Preux PM. Epilepsy: Asia versus Africa. Epilepsia 2014;55:1317‑21. 3. Bhalla D, Chea K, Chamroeun H, Vichea C, Huc P, Samleng C, et al. Comprehensive evaluation of the psychosocial parameters of epilepsy: A representative population‑based study in Prey Veng (Cambodia). Epilepsia 2013;54:1342‑51. 4. Bhalla D, Samleng C, Gérard D, Oum S, Druet‑Cabanac M, Preux PM. Epilepsy in Asia: A Cambodian experience. Neuroepidemiology 2013;40:260‑3. 5. Bhalla D, Chea K, Hun C, Vannareth M, Huc P, Chan S, et al. Population‑based study of epilepsy in Cambodia associated factors, measures of impact, stigma, quality of life, knowledge‑attitude‑practice, and treatment gap. PLoS One 2012;7:e46296. 6. Ngugi AK, Bottomley C, Kleinschmidt I, Wagner RG, Kakooza‑Mwesige A, Ae‑Ngibise K, et al. Prevalence of active convulsive epilepsy in sub‑Saharan Africa and associated risk factors: Cross‑sectional and case‑control studies. Lancet Neurol 2013;12:253‑63. 7. Bruno E, Bartoloni A, Zammarchi L, Strohmeyer M, Bartalesi F, Bustos JA, et al. Epilepsy and neurocysticercosis in Latin America: A systematic review and meta‑analysis. PLoS Negl Trop Dis 2013;7:e2480. 8. Kaiser C, Pion SD, Boussinesq M. Case‑control studies on the relationship between onchocerciasis and epilepsy: Systematic review and meta‑analysis. PLoS Negl Trop Dis 2013;7:e2147. 9. Ngoungou EB, Koko J, Druet‑Cabanac M, Assengone‑Zeh‑Nguema Y, Launay MN, Engohang E, et al. Cerebral malaria and sequelar epilepsy: First matched case‑control study in Gabon. Epilepsia 2006;47:2147‑53.
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10. Palmer BS. Meta‑analysis of three case controlled studies and an ecological study into the link between cryptogenic epilepsy and chronic toxoplasmosis infection. Seizure 2007;16:657‑63. 11. Quattrocchi G, Nicoletti A, Marin B, Bruno E, Druet‑Cabanac M, Preux PM. Toxocariasis and epilepsy: Systematic review and meta‑analysis. PLoS Negl Trop Dis 2012;6:e1775. 12. Nimaga K, Desplats D, Doumbo O, Farnarier G. Treatment with phenobarbital and monitoring of epileptic patients in rural Mali. Bull World Health Organ 2002;80:532‑7. 13. Bruno E, Nimaga K, Foba I, Vignoles P, Genton P, Doumbo O, et al. Results of an action‑research on epilepsy in rural Mali. PLoS One 2012;7:e44469. 14. Baskind R, Birbeck G. Epilepsy care in Zambia: A study of traditional healers. Epilepsia 2005;46:1121‑6. 15. Berhanu S, Alemu S, Prevett M, Parry EH. Primary care treatment of epilepsy in rural Ethiopia: Causes of default from follow‑up. Seizure 2009;18:100‑3. 16. Bhalla D, Chea K, Hun C, Chan V, Huc P, Chan S, et al. Epilepsy in Cambodia‑treatment aspects and policy implications: A population‑based representative survey. PLoS One 2013;8:e74817. 17. Baskind R, Birbeck GL. Epilepsy‑associated stigma in sub‑Saharan Africa: The social landscape of a disease. Epilepsy Behav 2005;7:68‑73. 18. Choi‑Kwon S, Chung C, Kim H, Lee S, Yoon S, Kho H, et al. Factors affecting the quality of life in patients with epilepsy in Seoul, South Korea. Acta Neurol Scand 2003;108:428‑34. 19. Yong L, Chengye J, Jiong Q. Factors affecting the quality of life in childhood epilepsy in China. Acta Neurol Scand 2006;113:167‑73. 20. Kasteleijn‑Nolst Trenité DG, Verrotti A, Di Fonzo A, Cantonetti L, Bruschi R, Chiarelli F, et al. Headache, epilepsy and photosensitivity: How are they connected? J Headache Pain 2010;11:469‑76. 21. Jacoby A, Baker GA, ediotrs. The problem of epilepsy. In: Quality of Life in Epilepsy: Beyond Seizure Counts in Assessment and Treatment. London: Harwood Academic; 2000. 22. Berhanu S, Alemu S, Asmera J, Prevett M. Primary care treatment of epilepsy in rural Ethiopia. Ethiop J Health Dev 2002;16:235‑40. 23. Kengne AP, Fezeu LL, Awah PK, Sobngwi E, Dongmo S, Mbanya JC. Nurse‑led care for epilepsy at primary level in a rural health district in Cameroon. Epilepsia 2008;49:1639‑42. 24. Watts AE. A model for managing epilepsy in a rural community in Africa. BMJ 1989;298:805‑7. 25. Helde G, Bovim G, Bråthen G, Brodtkorb E. A structured, nurse‑led intervention program improves quality of life in patients with epilepsy: A randomized, controlled trial. Epilepsy Behav 2005;7:451‑7. 26. Jilek‑Aall L, Rwiza HT. Prognosis of epilepsy in a rural African community: A 30‑year follow‑up of 164 patients in an outpatient clinic in rural Tanzania. Epilepsia 1992;33:645‑50. 27. Bhalla D. Domestic Health Visitor program – Improving Access to Care for People Living with Epilepsy in Laos. Available from: http://www. grandchallenges.ca/grantee‑stars/0325‑04/. [Last accessed on 2014 Nov 25]. How to cite this article: Hun C, Hok T, Ros S, Chan S, Bhalla D. Epilepsy: Some controversies, some knowledge and some experience from Cambodia. Neurol India 2014;62:606-9. Source of Support: Nil, Conflict of Interest: None declared.
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Epilepsy: Some controversies, some knowledge and some experience from Cambodia Chamroeun Hun1,2, Tola Hok1,3, Sina Ros1,2,4, Samleng Chan1,2,4, Devender Bhalla1 1 4
Cambodian Society of Neurology, 2Department of Neurology, Calmette Hospital, 3Department of Neurology, Kossamak Hospital, Department of Neurology, University of Health Sciences, Phnom Penh, Cambodia
Abstract
Address for correspondence: Dr. Devender Bhalla, Cambodian Society of Neurology, (An Entity Approved by the Government of Cambodia), 21 A, Street 261, Sangkat Teuk La Ak II, Khan Toul Kork, Phnom Penh, Cambodia. E‑mail: [email protected] Received : 02-12-2014 Review completed : 02-12-2014 Accepted : 05-12-2014
Epilepsy-related health outcomes remain unacceptably low in much of the developing world. According to us, it is because of the failure since long to see, and address, epilepsy beyond its preset conventional image. The objective of this paper was to highlight the presence, and influence, of these conventional practices and also to demonstrate what happened when a bold unconventional approach to address epilepsy was taken in Cambodia. Data are taken from existing published literature on epilepsy as well as our field experience during several population-based surveys conducted in Cambodia. We complimented this with our knowledge gained over this long period. It is demonstrated that epilepsy is far more important in Asia that it is currently considered to be, and also vis-à-vis other geographic regions. Pregnancy and birth-related factors carry far higher odds for epilepsy than several “highly vocal” infections. A refocus in epilepsy is required to help move from its traditional negative image to an image where epilepsy is considered a “positivelooking” disorder that is full of “opportunities;” such as availability of safe effective inexpensive treatment, etc. Stigma is a two-side entity (i.e., it is present, and it is influential), and diligence should be therefore practiced before using the stigma label. Nevertheless, psychosocial aspects shouldn’t be limited to stigma or Jacoby stigma scale alone. Quality of life is a subjective phenomenon, and patients should determine directly what affects them. It is highly desirable that if we want to find newer answers to old problems in epilepsy, we need to shed our conventional approach and preset conclusions. We should choose to move toward “opportunities” visibly present in epilepsy. Our Cambodian experience demonstrates more intimately that opportunities do get identified when preset conclusions are questioned, and an approach that goes beyond expected and by default is taken. Key words: Asia, Cambodia, epidemiology, epilepsy, prevalence, risk factors
Access this article online Quick Response Code:
Website: www.neurologyindia.com PMID: *** DOI: 10.4103/0028-3886.149376
606
Introduction Epilepsy is a major neurological disorder. Epilepsy‑related health outcomes remain unacceptably low in much of the developing world.[1] According to us, although hypothetically, it is because of the failure since long to see, and address, epilepsy beyond its preset conventional image. Many examples exist, (a) although it is often
Neurology India | Nov-Dec 2014 | Vol 62 | Issue 6
Hun, et al.: Epilepsy in Cambodia
reported that epilepsy is highly incident in Africa, the fact that all of these studies were retrospective or cross‑sectional and were conducted in biased populations, is not appreciated in the literature;[2] (b) Jacoby stigma scale (JSS) is often used to estimate “presence” of stigma but whether or not this stigma is “influential” (influences a person’s daily life and choices) is rarely looked at.[3] As a result, same result is obtained irrespective of the different particularities in the populations and populations continue to get labelized as being stigmatized. Many more such examples exist. The objective of this paper is to highlight the presence, and influence, of these conventional practices and also to demonstrate what happened when a bold unconventional approach to address epilepsy was taken in Cambodia.
What Did We Learn and Propose Choosing Asia is a necessity While looking at the epilepsy literature of the last few decades, Africa has visibly been the most frequent by‑default choice to undertake research activities.[2] Very recently, novel observations have been made that clearly indicate that for numerous reasons, Asia needs far more attention than it has been allocated to since long.[2] By taking an unconventional choice of Asia, our novel Cambodian activities have contributed to bridge this epilepsy literature gap in Asia.[4] Focus on correct risk factors and benefit as a result Factors other than infections have clearly far greater odds for epilepsy [Table 1], yet for some reasons, infections receive far more respect and reportage as epilepsy causes and risk factors. In Cambodia, factors related to pregnancy and birth (PREB) had highest odds for epilepsy that, in fact, re‑validate the 1954 concept of “reproductive causality” of epilepsy.[5] Focusing on PREB factors is beneficial for epilepsy for many reasons: [5] (a) Integration of epilepsy into already existing antenatal care (ANC) programs is at least theoretically feasible; (b) if integrated, this would mean epilepsy would become a “global initiative” since almost all countries have ANC programs; (c) epilepsy would benefit from resources of the ANC programs; (d) integration of epilepsy into ANC programs would concurrently increase the political interest level for the benefit of epilepsy; (e) such an integration can possibly be cost‑effective also. If this is done, then it is possible to prevent up to 40% of epilepsy cases, as we estimated in Cambodia.[5] Table 2 shows how barriers to the coverage gap are same for epilepsy and ANC. Don’t be too quick to using a stigma label Are those countries that have been reported as being stigmatized really stigmatized? As an example, in two Neurology India | Nov-Dec 2014 | Vol 62 | Issue 6
Table 1: Odds of epilepsy due to various risk factors Long or difficult birth (8.5 odds) in Cambodia[5] Eventful pregnancy (gestational hypertension, vaginal bleeding) of subject’s mother (8.6 odds) in Cambodia[5] Difficulty feeding, crying or breathing after birth (10.2 odds) in SSA[6] Neurocysticercosis (2.8 odds) in Latin America[7] Onchocerciasis (2.4 odds) in SSA[8] Malaria (3.9 odds) in SSA[9] Toxoplasmosis (4.8 odds published and 2.25 currently unpublished), worldwide[10] Toxocariasis (1.92 odds), worldwide[11] SSA ‑ Sub‑saharan africa
Table 2: Some factors of treatment gap and APNC
Treatment gap
APNC
Distance Lack of transport Interruption in daily activities No one to accompany Cost Time factor (e.g., walking long miles) Inadequate trained staff Laziness To come too many times Unavailability of medicines
Distance Lack of transport Interruption in daily activities No one to accompany Cost Time factor (e.g., walking long miles) Inadequate trained staff Laziness To come too many times Fear of animals on the way Shyness (embarrassment) among older or very young women Simple tools and solutions already available Complete mismatch between “what exists”“what is offered” and “what patient/public wants”
Common ground Foremost cause
APNC ‑ Ante and postnatal care
different treatment surveys conducted in Mali in 2002[12] and 2012,[13] the authors respectively stated “of these, 74% completed the 1st year (therapeutic) follow‑up” and “approximately 80% of the patients took the drug as prescribed.” Now, the question arises if people are stigmatized then why are they completing their therapeutic follow‑ups and taking drugs as prescribed? And more so accept these services from foreigners? Similar is the story in Zambia [14] where traditional healers have no issues with referring their patients to hospitals and in Ethiopia[15] where stigma was not even in the list of reasons for loss of therapeutic follow‑ups. In Cambodia as well,[3] for 72% patients the foremost coping strategy was to look for treatment while isolating oneself was a coping strategy for only 1% patient; only 6% and 8% patients reportedly concealed or denied epilepsy; supernatural origin of epilepsy was reportedly 0%; social support was 90%; for 84% patients epilepsy was treatable by modern medicine; mean self‑esteem was 7.5 (range: 0–8), etc., The treatment acceptance was 100%, and treatment compliance was never 95%.[16] 607
Hun, et al.: Epilepsy in Cambodia
Now, the question arises why there are positive attitudes, beliefs, and practices in populations that are concluded to be stigmatized by the JSS?[17] According to us, there are two explanations. Our first rather hypothetical reason is that for some reason JSS tends to give the same conclusion (i.e. stigmatize populations) every time it is used, irrespective of the reality in that population.[3] Its effect is, in fact, compounded by what we give as our second possible reason. Secondly, calling one population as stigmatized is a too precious conclusion to rely solely on three small questions of JSS. While addressing psychosocial profile of epilepsy, it is important to not just take the stigma as the only parameter but to also “cross‑check” this stigma through other parameters.[3] In Cambodia,[3] we not only looked at stigma but also did “cross‑checking” of this stigma with other important parameters such as determining what their self‑esteem is? Were they discriminated and in which domain? Whether there was any social support for patients? What were their coping strategies? Was there any fear related to epilepsy along with degree and origin of fear? Was there ever any denial of epilepsy? Was there ever concealment of epilepsy? This approach allowed us to obtain a complete picture of what is there in the people’s mind, something that can’t be achieved using JSS alone. Let patients decide what affects their quality of life Another conventional practice is to determine the quality of life (QOL) by professionals and not by the affected patients. QOL is a subjective phenomenon, and it is the patient who should determine what affects him/her and not professionals. This is the reason why studies may frequently replicate similar results[18,19] although a different point‑of‑view may also exist.[3] In Cambodia,[3] we used a direct method of determining what affects patients’ QOL by giving them a list of many (~50) possible factors and asked them to choose what affects their QOL. This is possibly the reason that factors such as postictal headache, anger, no nearby health facility, uncertainty of next seizure, bad taste of tablets, bed wetting, fear of injury, worry if seizures can ever be controlled, etc., were found to be relevant factors for QOL by patients. It is obvious that most such factors are rarely discussed in the epilepsy QOL literature.[3] These are important factors though; for instance, research has shown that there is a clear pathogenic relationship between headache and epilepsy.[20] To date, neither International Headache Society nor International League against Epilepsy mentioned headache/migraine as a sole ictal epileptic manifestation. Additionally, QOL is not necessarily limited to seizure frequency or severity alone, most major feature of epilepsy.[21] Determine what “people expect” with respect to treatment delivery Several treatment programs have been tested in various populations; and common observations can be 608
deduced easily from them. In Ethiopia,[22] Cameroon[23] and elsewhere, while it is possible to attract people toward taking initial treatments through primary‑care initiatives, the attrition rate is always high. This is not unexpected if patients have to walk 20 miles to receive a consultation and treatment, every time, even in such “primary‑care arrangements.”[24] In Ethiopia, it was also seen that attrition happens for exactly the same reasons due to which the treatment gap is originally high, e.g. distance to cover.[15] This shows a gap between “what is offered” and “what is expected” by the population.[15] Additionally, patients benefit if there is a periodic contact between service provider (SP) and patient; that may build confidence and perhaps protect against premature rupture of treatment as well.[24,25] This was seen in Tanzania also where nearly 3/4th patients who were initially treated by physician had died when these were revisited after a certain period. Most of this mortality was epilepsy‑related due to stoppage or irregular drug supplies.[26] This shows the extent to which a continuous contact and utilization of a local resource (e.g. local SP) is crucial. We devised a novel award‑winning approach called “domestic health visiting, (DHV)” through primary health center staff in ongoing projects in Cambodia and Laos.[16,27] Advantages of this approach are already discussed in details.[16] It is also demonstrated that how DHV can be generalized into a complete multi‑disease system of healthcare service delivery [Figure 1]. Project epilepsy as a positive‑looking disorder Should epilepsy be always seen through its negative connotations? Could epilepsy be promoted as a positive‑looking constructive disorder? • Highly effective and safe treatment is available since 100 years • Epilepsy is a visible disorder; >70% have generalized seizures that is, seizures can’t be hidden even if desired • Basic treatment is inexpensive in many countries
Figure 1: Possibility of how a domestic health visiting can be generalized to address several purposes at 1 time. GDHV - Generalist domestic health visitors, SDHV - Specialist domestic health visitors
Neurology India | Nov-Dec 2014 | Vol 62 | Issue 6
Hun, et al.: Epilepsy in Cambodia
• • • •
Treatment is simple, a tablet per day by mouth for a large number of patients Epilepsy is preventable without the need to create specific set‑ups Epilepsy can be decentralized to primary‑care level Its diagnosis doesn’t require sophisticated tools or huge innovations.
Conclusion It is highly desirable that a conventional approach toward epilepsy is shed, and we choose to move toward “opportunities” that are visibly present in epilepsy, rather than continue endlessly to focus on its negative aspects alone. Our Cambodian experience has also helped us to understand more intimately that opportunities do get identified when preset conclusions are questioned, and an approach that goes beyond expected and by default is taken.
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