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Understanding Parkinson disease in sub Saharan Africa: A call to action for the international neurologic community
Parkinsonism and Related Disorders xxx (2017) 1e2
Contents lists available at ScienceDirect
Parkinsonism and Related Disorders journal homepage: www.elsevier.com/locate/parkreldis
Editorial
Understanding Parkinson disease in sub Saharan Africa: A call to action for the international neurologic community
There is approximately one neurologist for every 19,100 people in the United States [1]. Similarly, in Europe the ratio is estimated to be 1: 20,600. In Africa however, there is one neurologist for an average of 3.3 million individuals [2]. In addition, one report found that in 23 African nations, with a population totaling 270 million people, there were only 1e4 neurologists in each country. Eleven nations, with a population totaling 26 million people, had no neurologists [3]. To compound the problem of this dismal current status of neurology in sub Saharan Africa (SSA), there is an epidemiologic transition occurring there. As nations in SSA advance economically, the prevalence of infectious diseases decreases, and that of noncommunicable diseases (NCD) increases. With changes in urbanization and lifestyle, an NCD epidemic in SSA is predicted [4,5]. In fact, the UN General Assembly recently acknowledged that “the global burden and threat of non-communicable diseases constitutes one of the major challenges for development in the twenty-first century.” [6] A recent article in the Financial Times described the dramatic increase in life expectancy in many countries in SSA [7]. Because of the work of governments, external donors such as the Bill and Melinda Gates Foundation, the introduction of antiretroviral drugs, and the improvement in preventative services, life expectancy since 2000 has increased between 20 and 42 percent. Although this is great news, clearly, the prevalence of neurodegenerative diseases, including Parkinson disease (PD), will increase with the aging of African populations. Are these countries prepared? In this current issue, Mokaya et al. report on the beliefs, knowledge and attitudes towards Parkinson's disease among the Xhosaspeaking black population in South Africa [8]. They performed a cross-sectional survey on 25 people with PD, 98 members of the public without PD who were attending a district clinic, and 31 traditional healers in the community. The questionnaire was based on one previously administered in Australia, but adapted from ones used for epilepsy in SSA. It included sections on demographics, belief systems, knowledge and attitudes that the respondents had about PD. The respondents had a fairly good knowledge base on PD, with a mean knowledge score of 63%. However, their beliefs and attitudes towards PD raise concern. Only 18% were able to identify the disease correctly. Amongst the members of the public without PD, 83% believed that PD was a “mental problem,” 32% thought it was
caused by witchcraft, and over 70% thought that those with PD would have a reduced chance of getting married or having children. 53% of all of the respondents believed that traditional healers could adequately treat PD. Methods suggested by these healers included steaming, removing the patients from the community (because of evil spirit possession) and offering special prayers. Those without PD also had higher attitude scores, indicating greater worry over PD sufferers being alone, losing friendships, and having people judge them. Of course this represents only one group of people in one country; however other studies have documented similar concerns. A study in Uganda reported that 17% of respondents believed that PD was contagious, and 28.7% believed it was a form of insanity. Approximately 2/3 did not know that the brain was the body part related to PD [9]. In Tanzania, many respondents thought PD was caused by cold weather and witchcraft [10]. This knowledge gap is not unique to PD. Stroke and epilepsy are far more prevalent in SSA than PD, and unfortunately similar beliefs have been documented in those disorders as well. Studies from Ethiopia, Ghana, Nigeria, and Senegal have shown that many people believe that epilepsy is caused by evil spirits, is a psychiatric disease, and should prevent people from getting married or even playing with other children [11e14]. Stigma is defined as a “mark of disgrace associated with a particular circumstance, quality, or person.” Certainly, the stigma applied to PD sufferers as reported by Mokaya et al. elevates their psychological distress. These beliefs further isolate the patient and their caregiver from their community and can lead to discrimination in education, employment and social relationships. Some suggest that the sequela of a disease is determined not only by the disease itself, but more importantly by the meaning of the disease within the patient's social environment [15e17]. Mokaya et al. have illustrated a problem that is shared across SSA that needs to be addressed as the continent transitions economically. The stigma attached to NCDs, including PD, can be as disabling to the patient as the pathology in the brain. This reminder is something we in the West frequently forget. As an international neurologic community, we will need to help our colleagues in SSA develop health education campaigns on PD and all the neurologic NCDs. Campaigns could include education through the internet, newspapers and television. One intervention using comic books for high school student improved knowledge of
http://dx.doi.org/10.1016/j.parkreldis.2017.05.008 1353-8020/© 2017 Published by Elsevier Ltd.
Please cite this article in press as: J.H. BowerUnderstanding Parkinson disease in sub Saharan Africa: A call to action for the international neurologic community, Parkinsonism and Related Disorders (2017), http://dx.doi.org/10.1016/j.parkreldis.2017.05.008
2
Editorial / Parkinsonism and Related Disorders xxx (2017) 1e2
epilepsy in Ethiopia [15]. An intervention in China combined a community education campaign on epilepsy with targeted education for the patients and their families. This was shown to improve the knowledge and attitudes towards epilepsy and reduce the psychological burden on the patients [18]. The involvement of traditional healers in the treatment of people with PD may sound strange to us in the West, but could be beneficial for the patients. Targeted education of these local practitioners could help them identify the patients sooner. In Tanzania, traditional healers were found to be highly receptive to referring those with dementia to allopathic treatment centers. Some wanted to start referring immediately [19]. The onus is on us, as neurologists, to use creative thinking to help those with PD in SSA, as their numbers begin to skyrocket. References [1] T.M. Dall, M.V. Storm, R. Chakrabarti, et al., Supply and demand analysis of the current and future US neurology workforce, Neurology 81 (2013) 470e478. [2] World Health Organization and World Federation of Neurology, Atlas: country resources for neurological disorders 2004, Geneva (2004) 1e59. [3] J.H. Bower, G. Zenebe, Neurologic services in the nations of Africa, Neurology 64 (2005) 412e415. [4] S. Dalal, J.J. Beunza, et al., Non-communicable diseases in sub-Saharan Africa: what we know now, Int. J. Epidemiol. 40 (4) (2011) 885e901. [5] S. Kapiga, Commentary: non-communicable diseases in sub-Saharan Africa: a new global health priority and opportunity, Int. J. Epidemiol. 40 (4) (2011) 902e903. [6] United Nations, Prevention and Control of Non-communicable Diseases: Report of the Secretary-general, New York, 2011, pp. 1e3. [7] S. Johnson, Africa's life expectancy jumps dramatically, Financ. Times (April 26, 2016). https://www.ft.com/content/38c2ad3e-0874-11e6-b6d3-746f8e9cdd33. [8] J. Mokaya, W.K. Gray, J. Carr, Beliefs, knowledge and attitudes towards Parkinson's disease among the Xhosa speaking black population in South Africa: a cross-sectional study, Park. Rel. Disord. (2017) (this issue). [9] M. Kaddumukasa, A. Kakooza, M.N. Kaddumukasa, E. Ddumba, L. Mugenyi, M. Sajatovic, E. Katabira, Knowledge and attitudes of Parkinson's disease in rural and urban Mukono district, Uganda: a cross-sectional, community-based
study, Parkinson’s Dis. (2015) 1e7. [10] G. MShana, C.L. Dotchin, R.W. Walker, “We call it the shaking illness': perceptions and experiences of Parkinson's disease in rural northern Tanzania, BMS Public Health 11 (2011) 219. [11] M.A. Gebrewold, F. Enquselassie, R. Teklehaimanot, S. Gugssa, Ethiopian teachers: their knowledge, attitude and practice towards epilepsy, BMC Neurol. 16 (2016) 167. [12] B.A. Ezeala-Adikaibe, J.U. Achor, A.C. Nwabueze, A.O. Agomoh, M. Chikani, O.S. Ekenze, I.O. Onwuekwe, M. Orakwue, Knowledge, attitude and practice of epilepsy among community residents in Enugu, South East Nigeria, Seizure 23 (10) (2014) 882e888. [13] N.F. Ndoye, A.D. Sow, A.G. Diop, B. Sessouma, F. Sene-Diouf, et al., Prevalence of epilepsy its treatment gap and knowledge, attitude and practice of its population in sub-urban Senegal an ILAE/IBE/WHO study, Seizure 14 (2) (2005) 106e111. [14] P.K. Nyame, R.B. Biritwum, Epilepsy: knowledge, attitude and practice in literate urban population, Accra, Ghana, West Afr. J. Med. 16 (3) (1997) 139e145. [15] R. Tekle-Haimanot, P. Pierre-Marie, G. Daniel, D.K. Worku, H.D. Belay, M.A. Gebrewold, Impact of an educational comic book on epilepsy-related knowledge, awareness, and attitudes among school children in Ethiopia, Epilepsy & Behav. 61 (2016) 218e223. [16] T.P. Suurmeijer, M.F. Reuvekamp, B.P. Aldenkamp, Social functioning, psychological functioning, and quality of life in epilepsy, Epilepsia 42 (9) (2001) 1160e1168. [17] M. Bury, The sociology of chronic illness: a review of research and prospects, Soc. Health Illn. 13 (1991) 31e32. [18] W. Wang, D. Zhao, J. Wua, T. Wang, X. Dai, G. Ma, B. Yang, C. Yuan, G.S. Bell, H.M. de Boer, L.L. Prilipko, L. Sander, Changes in knowledge, attitude, and practice of people with epilepsy and their families after an intervention in rural China, Epilepsy & Behav. 16 (2009) 76e79. [19] G. Hindley, J. Kissima, L.L. Oates, S. Paddick, A. Kisoli, C. Brandsma, W.K. Gray, R.W. Walker, D. Mushi, C.L. Dotchin, The role of traditional and faith healers in the treatment of dementia in Tanzania and the potential for collaboration with allopathic healthcare services, Age Aging 46 (2016) 130e137.
James H. Bower, MD, MSc Department of Neurology, Mayo Clinic, Rochester, MN, USA 9 May 2017
Please cite this article in press as: J.H. BowerUnderstanding Parkinson disease in sub Saharan Africa: A call to action for the international neurologic community, Parkinsonism and Related Disorders (2017), http://dx.doi.org/10.1016/j.parkreldis.2017.05.008
Contents lists available at ScienceDirect
Parkinsonism and Related Disorders journal homepage: www.elsevier.com/locate/parkreldis
Editorial
Understanding Parkinson disease in sub Saharan Africa: A call to action for the international neurologic community
There is approximately one neurologist for every 19,100 people in the United States [1]. Similarly, in Europe the ratio is estimated to be 1: 20,600. In Africa however, there is one neurologist for an average of 3.3 million individuals [2]. In addition, one report found that in 23 African nations, with a population totaling 270 million people, there were only 1e4 neurologists in each country. Eleven nations, with a population totaling 26 million people, had no neurologists [3]. To compound the problem of this dismal current status of neurology in sub Saharan Africa (SSA), there is an epidemiologic transition occurring there. As nations in SSA advance economically, the prevalence of infectious diseases decreases, and that of noncommunicable diseases (NCD) increases. With changes in urbanization and lifestyle, an NCD epidemic in SSA is predicted [4,5]. In fact, the UN General Assembly recently acknowledged that “the global burden and threat of non-communicable diseases constitutes one of the major challenges for development in the twenty-first century.” [6] A recent article in the Financial Times described the dramatic increase in life expectancy in many countries in SSA [7]. Because of the work of governments, external donors such as the Bill and Melinda Gates Foundation, the introduction of antiretroviral drugs, and the improvement in preventative services, life expectancy since 2000 has increased between 20 and 42 percent. Although this is great news, clearly, the prevalence of neurodegenerative diseases, including Parkinson disease (PD), will increase with the aging of African populations. Are these countries prepared? In this current issue, Mokaya et al. report on the beliefs, knowledge and attitudes towards Parkinson's disease among the Xhosaspeaking black population in South Africa [8]. They performed a cross-sectional survey on 25 people with PD, 98 members of the public without PD who were attending a district clinic, and 31 traditional healers in the community. The questionnaire was based on one previously administered in Australia, but adapted from ones used for epilepsy in SSA. It included sections on demographics, belief systems, knowledge and attitudes that the respondents had about PD. The respondents had a fairly good knowledge base on PD, with a mean knowledge score of 63%. However, their beliefs and attitudes towards PD raise concern. Only 18% were able to identify the disease correctly. Amongst the members of the public without PD, 83% believed that PD was a “mental problem,” 32% thought it was
caused by witchcraft, and over 70% thought that those with PD would have a reduced chance of getting married or having children. 53% of all of the respondents believed that traditional healers could adequately treat PD. Methods suggested by these healers included steaming, removing the patients from the community (because of evil spirit possession) and offering special prayers. Those without PD also had higher attitude scores, indicating greater worry over PD sufferers being alone, losing friendships, and having people judge them. Of course this represents only one group of people in one country; however other studies have documented similar concerns. A study in Uganda reported that 17% of respondents believed that PD was contagious, and 28.7% believed it was a form of insanity. Approximately 2/3 did not know that the brain was the body part related to PD [9]. In Tanzania, many respondents thought PD was caused by cold weather and witchcraft [10]. This knowledge gap is not unique to PD. Stroke and epilepsy are far more prevalent in SSA than PD, and unfortunately similar beliefs have been documented in those disorders as well. Studies from Ethiopia, Ghana, Nigeria, and Senegal have shown that many people believe that epilepsy is caused by evil spirits, is a psychiatric disease, and should prevent people from getting married or even playing with other children [11e14]. Stigma is defined as a “mark of disgrace associated with a particular circumstance, quality, or person.” Certainly, the stigma applied to PD sufferers as reported by Mokaya et al. elevates their psychological distress. These beliefs further isolate the patient and their caregiver from their community and can lead to discrimination in education, employment and social relationships. Some suggest that the sequela of a disease is determined not only by the disease itself, but more importantly by the meaning of the disease within the patient's social environment [15e17]. Mokaya et al. have illustrated a problem that is shared across SSA that needs to be addressed as the continent transitions economically. The stigma attached to NCDs, including PD, can be as disabling to the patient as the pathology in the brain. This reminder is something we in the West frequently forget. As an international neurologic community, we will need to help our colleagues in SSA develop health education campaigns on PD and all the neurologic NCDs. Campaigns could include education through the internet, newspapers and television. One intervention using comic books for high school student improved knowledge of
http://dx.doi.org/10.1016/j.parkreldis.2017.05.008 1353-8020/© 2017 Published by Elsevier Ltd.
Please cite this article in press as: J.H. BowerUnderstanding Parkinson disease in sub Saharan Africa: A call to action for the international neurologic community, Parkinsonism and Related Disorders (2017), http://dx.doi.org/10.1016/j.parkreldis.2017.05.008
2
Editorial / Parkinsonism and Related Disorders xxx (2017) 1e2
epilepsy in Ethiopia [15]. An intervention in China combined a community education campaign on epilepsy with targeted education for the patients and their families. This was shown to improve the knowledge and attitudes towards epilepsy and reduce the psychological burden on the patients [18]. The involvement of traditional healers in the treatment of people with PD may sound strange to us in the West, but could be beneficial for the patients. Targeted education of these local practitioners could help them identify the patients sooner. In Tanzania, traditional healers were found to be highly receptive to referring those with dementia to allopathic treatment centers. Some wanted to start referring immediately [19]. The onus is on us, as neurologists, to use creative thinking to help those with PD in SSA, as their numbers begin to skyrocket. References [1] T.M. Dall, M.V. Storm, R. Chakrabarti, et al., Supply and demand analysis of the current and future US neurology workforce, Neurology 81 (2013) 470e478. [2] World Health Organization and World Federation of Neurology, Atlas: country resources for neurological disorders 2004, Geneva (2004) 1e59. [3] J.H. Bower, G. Zenebe, Neurologic services in the nations of Africa, Neurology 64 (2005) 412e415. [4] S. Dalal, J.J. Beunza, et al., Non-communicable diseases in sub-Saharan Africa: what we know now, Int. J. Epidemiol. 40 (4) (2011) 885e901. [5] S. Kapiga, Commentary: non-communicable diseases in sub-Saharan Africa: a new global health priority and opportunity, Int. J. Epidemiol. 40 (4) (2011) 902e903. [6] United Nations, Prevention and Control of Non-communicable Diseases: Report of the Secretary-general, New York, 2011, pp. 1e3. [7] S. Johnson, Africa's life expectancy jumps dramatically, Financ. Times (April 26, 2016). https://www.ft.com/content/38c2ad3e-0874-11e6-b6d3-746f8e9cdd33. [8] J. Mokaya, W.K. Gray, J. Carr, Beliefs, knowledge and attitudes towards Parkinson's disease among the Xhosa speaking black population in South Africa: a cross-sectional study, Park. Rel. Disord. (2017) (this issue). [9] M. Kaddumukasa, A. Kakooza, M.N. Kaddumukasa, E. Ddumba, L. Mugenyi, M. Sajatovic, E. Katabira, Knowledge and attitudes of Parkinson's disease in rural and urban Mukono district, Uganda: a cross-sectional, community-based
study, Parkinson’s Dis. (2015) 1e7. [10] G. MShana, C.L. Dotchin, R.W. Walker, “We call it the shaking illness': perceptions and experiences of Parkinson's disease in rural northern Tanzania, BMS Public Health 11 (2011) 219. [11] M.A. Gebrewold, F. Enquselassie, R. Teklehaimanot, S. Gugssa, Ethiopian teachers: their knowledge, attitude and practice towards epilepsy, BMC Neurol. 16 (2016) 167. [12] B.A. Ezeala-Adikaibe, J.U. Achor, A.C. Nwabueze, A.O. Agomoh, M. Chikani, O.S. Ekenze, I.O. Onwuekwe, M. Orakwue, Knowledge, attitude and practice of epilepsy among community residents in Enugu, South East Nigeria, Seizure 23 (10) (2014) 882e888. [13] N.F. Ndoye, A.D. Sow, A.G. Diop, B. Sessouma, F. Sene-Diouf, et al., Prevalence of epilepsy its treatment gap and knowledge, attitude and practice of its population in sub-urban Senegal an ILAE/IBE/WHO study, Seizure 14 (2) (2005) 106e111. [14] P.K. Nyame, R.B. Biritwum, Epilepsy: knowledge, attitude and practice in literate urban population, Accra, Ghana, West Afr. J. Med. 16 (3) (1997) 139e145. [15] R. Tekle-Haimanot, P. Pierre-Marie, G. Daniel, D.K. Worku, H.D. Belay, M.A. Gebrewold, Impact of an educational comic book on epilepsy-related knowledge, awareness, and attitudes among school children in Ethiopia, Epilepsy & Behav. 61 (2016) 218e223. [16] T.P. Suurmeijer, M.F. Reuvekamp, B.P. Aldenkamp, Social functioning, psychological functioning, and quality of life in epilepsy, Epilepsia 42 (9) (2001) 1160e1168. [17] M. Bury, The sociology of chronic illness: a review of research and prospects, Soc. Health Illn. 13 (1991) 31e32. [18] W. Wang, D. Zhao, J. Wua, T. Wang, X. Dai, G. Ma, B. Yang, C. Yuan, G.S. Bell, H.M. de Boer, L.L. Prilipko, L. Sander, Changes in knowledge, attitude, and practice of people with epilepsy and their families after an intervention in rural China, Epilepsy & Behav. 16 (2009) 76e79. [19] G. Hindley, J. Kissima, L.L. Oates, S. Paddick, A. Kisoli, C. Brandsma, W.K. Gray, R.W. Walker, D. Mushi, C.L. Dotchin, The role of traditional and faith healers in the treatment of dementia in Tanzania and the potential for collaboration with allopathic healthcare services, Age Aging 46 (2016) 130e137.
James H. Bower, MD, MSc Department of Neurology, Mayo Clinic, Rochester, MN, USA 9 May 2017
Please cite this article in press as: J.H. BowerUnderstanding Parkinson disease in sub Saharan Africa: A call to action for the international neurologic community, Parkinsonism and Related Disorders (2017), http://dx.doi.org/10.1016/j.parkreldis.2017.05.008