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WFN Survey of neurological services: A worldwide perspective
Journal of the Neurological Sciences 247 (2006) 29 – 34 www.elsevier.com/locate/jns
WHO/WFN Survey of neurological services: A worldwide perspective Aleksandar Janca a, Johan A. Aarli b, Leonid Prilipko c, Tarun Dua c,*, Shekhar Saxena c, Benedetto Saraceno c a
School of Psychiatry and Clinical Neurosciences, University of Western Australia, Perth, Australia World Federation of Neurology, and Department of Neurology, University of Bergen, Bergen, Norway Department of Mental Health and Substance Abuse, World Health Organization, Avenue Appia 20, CH-1211 Geneva 27, Switzerland b
c
Received 8 December 2005; received in revised form 27 February 2006; accepted 1 March 2006 Available online 19 April 2006
Abstract According to the findings obtained in the context of a Global Initiative on Neurology and Public Health carried out by the World Health Organization (WHO), there has been a lack of reliable and comparative data on services and other resources for neurological disorders in many parts of the world. In view of these findings and in collaboration with the World Federation of Neurology (WFN), WHO has recently organized an international Survey of Country Resources for Neurological Disorders, which involved 109 countries and covered over 90% of the world’s population. This large WHO/WFN collaborative endeavour collected expert information on a number of aspects of neurological care provision around the world including availability of neurological services in primary care; human resources for neurological disorders; sub-specialized neurological services; primary method of financing of neurological care; and disability benefits for patients with neurological disorders. The WHO/WFN Survey results clearly demonstrate that there are inadequate resources for patients with neurological disorders in most parts of the world, and highlight inequalities in the access to neurological care across different populations, and in particular in those living in low-income countries and in developing regions of the world. The key findings of the WHO/WFN Survey including their impact on delivery of neurological care around the world are presented and discussed in this paper. The entire set of WHO/WFN Survey results including numerous tables, graphs and accompanying commentaries can be found in the WHO/WFN Atlas of Country Resources for Neurological Disorders, which is available on request from WHO or at http://www.who.int/mental_health/neurology/. D 2006 Elsevier B.V. All rights reserved. Keywords: Neurological services; Neurological resources; Neurological care; Neurology and public health
1. Introduction The World Health Organization (WHO) bears a constitutional responsibility of fostering cooperation among scientific and professional groups with the aim of contributing to the advancement of global health [1]. WHO’s collaboration with numerous governmental and nongovernmental organizations has resulted in many international projects that assist health professionals and policy-makers to prioritise health needs, and design evidence-based health programmes in all areas of medicine including neurology. One of the recent examples of such a collaborative endeavour is the Global Burden of Disease study – a joint * Corresponding author. Tel.: +41 22 7913059; fax: +41 22 7914160. E-mail address: [email protected] (T. Dua). 0022-510X/$ - see front matter D 2006 Elsevier B.V. All rights reserved. doi:10.1016/j.jns.2006.03.003
project that involved WHO, the World Bank, and Harvard School of Public Health. The study results pertaining to neurological disorders demonstrated that their global health impact was significantly underestimated as these disorders accounted for 4.2% of the global burden of disease [2]. The most recent estimate of the global burden due to neurological disorders is even higher (5.2%) [3]. Another important WHO collaborative project was WHO Global Initiative on Neurology and Public Health, which revealed a lack of reliable and comparable information regarding the prevalence of, and the policies, programmes, and resources for neurological disorders in many countries around the globe [4 –6]. In an attempt to resolve this information gap, WHO has recently expanded the overall objectives of this Global Initiative and organised an international Survey of Country Resources for Neurological
30
A. Janca et al. / Journal of the Neurological Sciences 247 (2006) 29 – 34
Disorders. This large collaborative project involved WHO Headquarters and its six Regional Offices as well as the World Federation of Neurology (WFN), which is committed to improving human health worldwide by promoting prevention and care of people with neurological disorders. Over the years, WHO and WFN have worked closely on a number of projects and activities related to prevention and control of non-communicable and communicable neurological disorders. The WHO/WFN Survey of Country Resources for Neurological Disorders (hereafter WHO/WFN Survey) represents one of the most recent projects carried out in the context of this close and long-lasting international collaboration. The main objectives of the WHO/WFN Survey were to collect data and obtain expert information on: ˝ the most common neurological conditions and their distribution in primary care and specialist settings; ˝ availability of neurological procedures, treatments, and services; ˝ number and types of health professionals involved in the delivery of neurological care; ˝ characteristics of postgraduate teaching in neurology; ˝ budget for, and financing of neurological care (including the types of health insurance and disability benefits); ˝ availability, role, and involvement of national neurological associations and other nongovernmental organisations in advocacy to raise public and professional awareness of neurological disorders and their participation in the treatment, rehabilitation, and prevention of neurological disorders. The WHO/WFN Survey was conducted over 2 years – between 2001 and 2003 – during which statistics were obtained from 109 countries. In 2004, the WHO/WFN Survey findings were published within the WHO/WFN Atlas of Country Resources for Neurological Disorders [7], which provides graphic presentation and textual descriptions of the currently available neurological care, facilities and services for over 90% of the world’s population. A hard copy of the WHO/WFN Atlas is available on request from WHO. The electronic version of the entire document is available at http://www.who.int/mental_health/neurology/. This paper is based on the data contained in the WHO/ WFN Atlas and provides a summary of methods and a selection of key findings from the WHO/WFN Survey.
2. Materials and methods The WHO/WFN Survey questionnaire was drafted in English by a group of WHO and WFN consultants. It was accompanied by a glossary of terms to ensure equal comprehension of questionnaire items by the respondents belonging to different cultures and settings. The feasibility and comprehensibility of the survey questions and glossary
definitions were piloted in one developed and one developing country. The revised, final versions of the survey questionnaire and glossary were translated from English into the following official languages of WHO: Arabic, French, Russian and Spanish. Translated versions of WHO/WFN Survey questionnaires and glossary definitions were then forwarded to the official delegates of the member societies of WFN. In countries where a WFN official delegate was nonexistent or unavailable, the documents were sent to the experts in the field of neurology whose names were suggested by the respective WHO Regional Office. The WHO/WFN Survey questionnaires were obtained from 106 Member States of WHO, one Associate Member (Puerto Rico), one Special Administrative Region (Hong Kong, China), and one territory (West Bank and Gaza Strip); such a grouping represents 34.8% of the countries forming the African Region, 40% of the Americas, 85.7% of Eastern Mediterranean, 82.7% of the Europe, 54.5% of the Southeast Asia, and 33.3% of the countries constituting the Western Pacific Region. The population covered pertained to 90.1% of the world’s population: specifically 52.3% of the population in Africa, 89.3% in the Americas, 84.1% in the Eastern Mediterranean, 97.2% in Europe, 96.8% in Southeast Asia and 97.1% in the Western Pacific Region. The data collected via WHO/WFN Survey questionnaires were entered into an electronic database system and analysed using a special edition of the Stata, Version 8 software. Frequency distributions and measures of central tendency (mean, median and standard deviation) were calculated as appropriate. Countries were grouped into the above-mentioned six WHO Regions (i.e., Africa, the Americas, Eastern Mediterranean, Europe, Southeast Asia and Western Pacific) and according to four World Bank income categories using 2002 gross national income (GNI) per capita published in the World Bank List of Economies in July 2003. These GNI categories were as follows: low (US$ 735 or less), lower-middle (US$ 736– 2935), upper-middle (US$ 2936– 9075) and high-income (US$ 9076 or more) [8]. The WHO/WFN Survey data were assembled in the form of a WHO/WFN Atlas of Country Resources for Neurological Disorders [7], which contains the following sections: (1) Neurological disorders in primary care – reported frequency; (2) Neurological services in primary care; (3) Therapeutic drugs in primary care; (4) Neurological disorders in specialist care – reported frequency; (5) Neurological beds; (6) Sub-specialized neurological services; (7) Neurologists; (8) Neurological nurses; (9) Neurosurgeons; (10) Neuropaediatricians; (11) Financing for neurological services; and (12) Neurological associations and nongovernmental organisations. WHO/WFN Atlas graphic presentation included world maps with coloured coding of country data; regional maps displaying aggregate figures by WHO Regions; and bar and pie charts illustrating frequencies, medians and means. The accompanying text provided definitions of the terms used in the survey questionnaire, and a discussion of
A. Janca et al. / Journal of the Neurological Sciences 247 (2006) 29 – 34 Table 1 Neurological services in primary health care WHO region
Emergency care (%)
Follow-up treatment (%)
Africa (N = 16) Americas (N = 13) Eastern Mediterranean (N = 17) Europe (N = 41) Southeast Asia (N = 6) Western Pacific (N = 9) World
75 92.3 76.5 65.9 83.3 77.8 74
68.8 92.3 76.5 73.2 100 66.7 76
N = number of countries providing the data.
selected survey findings. In some instances, comments offered by leading experts who reviewed the draft report were also incorporated, as was the additional data and evidence obtained through literature reviews. The abovementioned WHO/WFN Atlas sections were followed by several short reviews of selected topics because of their significance for better understanding and effective management of specific neurological disorders including epilepsy, cerebrovascular diseases, headaches, dementias, Parkinson’s disease and multiple sclerosis.
3. Results 3.1. Neurological services in primary care According to the glossary definitions used in the WHO/ WFN Survey, neurological services provided in primary care denote the initial preventive and curative treatments offered within the health care system. To investigate the provision of neurological facilities at the primary health care level, the questionnaire particularly focused upon the availability of emergency care and follow-up treatments (Table 1), with each being reported as present by approximately 3/4 (74% and 76%, respectively) of the responding countries. Regionally, the Americas and Southeast Asia had the greatest source of these types of services at primary care level. Specifically, 92.3% and 83.3% of countries in the region of the Americas and Southeast Asia (respectively) provided access to emergency care, while 92.3% of the American countries and all of the Southeast Asian countries
31
involved in the survey offered some type of follow-up treatment for patients with neurological disorders in primary care. Conversely, around 1/3 of the countries in the Western Pacific (33.3%) and African (31.2%) region had no followup treatment, and more than 1/3 of the participating European countries (34.1%) provided no emergency care for patients with neurological disorders in primary care. 3.2. Resources for neurological disorders The analysis of the available resources for patients with neurological disorders involved consideration of the number of neurological beds, neurologists, neurological nurses, neurosurgeons, and neuropaediatricians (Table 2). For the purpose of this survey, neurological beds were defined as hospital beds maintained only for neurological patients on a continuous basis. Worldwide, the WHO/WFN Survey found a median number of 3.6 beds to be available for every 100,000 people. This average was contrasted, however, with only 0.3 neurological beds existing for every 100,000 Southeast Asians or African patients, and more than 17 for every 100,000 European patients. Worldwide, the median number of neurologists per 100,000 people was 0.91. With the exception of Europe (with the median number of 4.84 neurologists per 100,000 people), the median number of neurologists in other WHO Regions was substantially lower with Africa and Southeast Asia having only 0.03 and 0.07 neurologists per 100,000 people, respectively. A similar regional pattern was identified with regard to the availability of neurological nurses, but the specific figures were substantially reduced: Europe had 2.43 neurological nurses per 100,000 people, Southeast Asia 0.005, and Africa 0. Although these specialist nurses were often considered to be the key members of the team which per survey definition had to provide comprehensive neurological care, training and supervision, their median number globally was just 0.11 for every 100,000 people. The median number of neurosurgeons around the world was 0.56 per 100 000 people, with only Europe having a median number above 1 (1.02). Again, Africa and Southeast Asia ranked lowest with a median number of 0.01 and 0.03 neurosurgeons per 100,000 people, respectively.
Table 2 Resources for neurological disorders (median number per 100,000 population) WHO region
Neurological beds (N = 95)
Neurologists (N = 106)
Neurological nurses (N = 82)
Neurosurgeons (N = 103)
Neuropaediatricians (N = 98)
Africa Americas Eastern Mediterranean Europe Southeast Asia Western Pacific World
0.3 1.7 1.5 17.1 0.3 2.6 3.6
0.03 0.89 0.32 4.84 0.07 0.77 0.91
0 0.14 0.13 2.43 0.005 0.32 0.11
0.01 0.76 0.37 1.02 0.03 0.39 0.56
0 0.12 0.06 0.47 0.003 0.08 0.1
N = number of countries providing the data.
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A. Janca et al. / Journal of the Neurological Sciences 247 (2006) 29 – 34
The international shortage of neuropaediatricians was present across all regions, with each WHO Region having less much less than 1 neuropaediatrician for every 100,000 people. Moreover, the WHO/WFN Survey data have revealed that those countries which have the significant proportion of children often have the poorest statistics on child neurological care resources: Africa had 0, and Southeast Asia had only 0.003 neuropaediatricians per 100,000 population. 3.3. Sub-specialized neurological services The data on sub-specialized neurological services (Table 3) were based on participants’ dichotomous categorical responses (i.e., ‘‘present’’ or ‘‘absent’’) and included availability of paediatric neurology services (this information was elicited separately from the above-reported average number of neuropaediatricians); neurological rehabilitation services; neuroradiological services; and stroke units. According to the definitions used in the survey, these sub-specialized neurological services were required to form a basis for conducting research and training, and provide highly specialised diagnoses, management and care for specific neurological conditions. Globally, 77.8% of the countries had available at least one neuroradiologic service. However, there was a substantial difference across regions: for example, all of the Southeast Asian countries reported to have such a service, compared to only 18.8% of countries in Africa. In this survey, all the countries representing the Americas, and 95.2% of those for Europe reported to have at least one paediatric neurology service; yet, such services were absent in 1/3 (33.3%) of Southeast Asian and 62.5% of African countries. In contrast, the regional distribution of neurological rehabilitation services was fairly even, but again 81.2% of African countries had no such service. Although stroke units have been shown to decrease mortality and residual disability, increase the number of independent survivors, and reduce institutionalization without increasing the cost of care, only 62% of all the participating countries
Table 3 Sub-specialized neurological services WHO region
Paediatric neurology (%)
Neurological rehabilitation (%)
Africa (N = 16) Americas (N = 14) Eastern Mediterranean (N = 18) Europe (N = 42) Southeast Asia (N = 6) Western Pacific (N = 9) World
37.5 100 68.4
18.8 78.6 73.7
Neuroradiology (%) 18.8 92.9 84.2
Stroke units (%) 31.3 64.3 26.3
Table 4 Primary method of financing neurological care by WHO regions WHO region
Out-of-pocket Tax-based Social Private (%) (%) insurance insurance (%) (%)
Africa (N = 12) Americas (N = 7) Eastern Mediterranean (N = 16) Europe (N = 36) Southeast Asia (N = 5) Western Pacific (N = 6) World
83 14 21
17 14 58
0 43 21
8 40 17 25.6
33 40 50 37.8
59 20 33 35.4
88.1 83.3
85.7 100
83.3 83.3
88.9
77.8
88.9
77.8
80.6
73.2
77.8
62
N = number of countries providing the data.
0 0 0 1.2
N = number of countries providing the data.
reported to have stroke units. The situation was found to be even bleaker in the Eastern Mediterranean and African regions where the stroke units were present in only 26.3% and 31.3% of the participating countries, respectively. 3.4. Primary method of financing neurological care Several types of financing of neurological care were considered in the context of this WHO/WFN Survey: outof-pocket payments (made by a patient or his/her family); tax-based funding (arising from general or specific taxation); social insurance; and private insurance. According to this specification, the obtained data on financing of neurological care also provided some insight into the resource utilization, quality of and access to the health care system. Table 4 shows primary methods of financing neurological care across six WHO regions. It is striking to see that in 83% of countries from Africa the out-of-pocket payments represent the primary method of financing neurological care (compared with 25.6% worldwide). Tax-based financing is most frequently reported method in the following three WHO Regions: Eastern Mediterranean (58% countries), Western Pacific (50% countries), and Southeast Asia (40%). In spite of the relatively small number of participating countries, it is notable that private health insurance as the primary method of financing of neurological care exists in 29% of countries of the Americas, but has not been reported by any of the countries across other five WHO regions. Table 5 Primary method of financing neurological care by World Bank income categories Income categories
95.2 66.7
0 29 0
Out-of-pocket Tax-based Social Private (%) (%) insurance insurance (%) (%)
High (N = 28) 3.6 Higher-middle (N = 14) 0 Lower-middle (N = 21) 19.1 Low (N = 19) 84.2
50 42.8 42.8 10.5
N = number of countries providing the data.
42.8 57.1 38.1 5.3
3.6 0 0 0
A. Janca et al. / Journal of the Neurological Sciences 247 (2006) 29 – 34
Primary methods of financing neurological care according to the World Bank income categories are given in Table 5. Like the above, it is striking to note that out-ofpocket payments represent the primary method of financing neurological care in 84.2% of low income countries. To no surprise, private health insurance has been reported as primary financing method by a small number of high income countries (3.6%). Social insurance and tax-based payments have been identified as the primary financing methods in a majority of high and middle income countries. 3.5. Disability benefits for patients with neurological disorders According to the glossary definitions used in this WHO/ WFN Survey, disability benefits are given to an individual whose functional ability is limited due to impairments caused by a disorder and is eligible for public assistance in the form of money, or benefits relating to rehabilitation, health, housing, transport, education, and workplace. Table 6 shows that 91.7% of the countries representing the Americas in this survey offer some form of monetary benefit, unlike many countries across other WHO Regions where availability of such benefits ranges from 50% to 75%. Rehabilitation and other health benefits are available in 64.9% of all countries that participated in the survey, with a wide range of availability of such benefits across six WHO Regions (50 – 100%). Similar wide range pattern exists for the availability of workplace benefits with a substantially lower global average of 37.8%. With the exception of Africa, a number of other benefits exist for patents with neurological disorders across WHO regions giving a world average of 45.9%. The above listed results clearly indicate that many countries have to advocate better provision of benefits for people with neurological disorders as it is vital for preserving their dignity and protecting their human rights.
Table 6 Disability benefits for patients with neurological disorders WHO region
Monetary benefits (%)
Rehabilitation and health benefits (%)
Africa (N = 4) Americas (N = 12) Eastern Mediterranean (N = 12) Europe (N = 35) Southeast Asia (N = 2) Western Pacific (N = 7) World (N = 74)
75 91.7 66.7
50 66.7 58.3
50 50 33.3
1 58.3 50
74.3 50
65.7 100
31.4 100
48.6 50
71.4
71.4
28.6
28.6
75.7
64.9
37.8
45.9
N = number of countries providing the data.
Workplace benefits (%)
Other benefits (%)
33
4. Discussion According to the findings obtained in the context of WHO Global Initiative on Neurology and Public Health, many of the neurological disorders are chronic, progressive and constitute global public health problem. In addition, they are frequent and disabling, and they represent a significant burden on communities and societies all over the world. The extension of life expectancy and the ageing of general populations in both developed and developing countries are likely to increase the prevalence of many of these disorders. At the same time, there is insufficient information regarding the policies, programmes and services for their management in many parts of the world. Lack of this information is a major impediment at both national and international level for health planners and policy makers for planning appropriate services. It also hampers the efforts made by the nongovernmental organisations and consumer groups to improve the services [4 –6]. In an attempt to resolve the above-mentioned information gap, WHO and WFN have recently organized an international Survey of Country Resources for Neurological Disorders, which involved 109 countries and covered over 90% of the world’s population. The survey results have been included in the WHO/WFN Atlas of Country Resources for Neurological Disorders, which vividly illustrates the existence of inadequate resources for neurological disorders in most countries, and highlights inequalities of access to neurological care across populations, particularly in low-income countries and developing regions of the world. Certain limitations of this joint WHO/WFN Survey and Atlas projects have to be acknowledged before commenting on the importance and impact of their results. The data presented in the WHO/WFN Atlas represent the expert views and evaluations by only one key individual (in most cases a WFN official delegate) from each country. Furthermore, the non-availability of certain types of information from some countries caused the statistical denominators for different aspects of neurological care to vary. Finally, categorical questions requiring either a Fyes_ or Fno_ response did not allow for the identification of any specifics relating to the quality or spatial distribution of the resource in question. Despite these limitations, the WHO/WFN Survey and Atlas projects remain the most extensive investigation into the global status of neurological resources and services available to date. The results illustrate that the access to neurological care is significantly poor compared to the global burden associated with neurological disorders. The level of services and resources required to treat neurological disorders varies considerably across regions and countries. They are developed in most European and high income-group countries of the world, but greatly insufficient and disproportionate to the demand within African and low-income group countries. The WHO/WFN Survey
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A. Janca et al. / Journal of the Neurological Sciences 247 (2006) 29 – 34
and Atlas data therefore confirm the need to address the quality and distribution of neurological care around the globe. In conclusion, the data obtained through the WHO/WFN Survey and Atlas projects fill the information gaps with regard to resources for neurological care the world over. This knowledge will therefore assist health professionals and policy makers worldwide to identify areas that need urgent attention, and thus more effectively plan, develop, and provide care for people suffering from neurological disorders. It would also be beneficial in the development and implementation of the specific programmes and strategies required to improve the control of neurological disorders. The data can furthermore serve as a baseline for monitoring the provision of resources and services, allowing for comparative analyses of the available resources for neurological disorders across geographical regions and time lines. It is hoped that all those who are responsible and involved in treatment and care of people with neurological disorders will find a way to employ WHO/WFN Survey and Atlas findings in their advocacy efforts for more and better resources for neurological care.
References [1] WHO. What it is, what it does. Geneva’ World Health Organization; 1988. [2] Murray CJL, Lopez AD, editors. The global burden of disease: a comprehensive assessment of mortality and disability from diseases, injuries and risk factors in 1990 and projected to 2020Global burden of disease and injury series, vol. I. Cambridge (MA)’ Harvard School of Public Health on behalf of the World Health Organization and the World Bank; 1996. [3] The world health report 2003 – shaping the future. Geneva’ World Health Organization; 2003. [4] Janca A, Prilipko L, Costa e Silva JA. The World Health Organization’s global initiative on neurology and public health. J Neurol Sci 1997; 145:1 – 2. [5] Aarli JA. Neurology and public health: strategy and perspectives. J Neurol Sci 1997;145:3 – 4. [6] Janca A, Prilipko L, Saraceno B. A World Health Organization perspective on neurology and neuroscience. Arch Neurol 2000;57: 1786 – 8. [7] World Health Organization, World Federation of Neurology. Atlas: country resources for neurological disorders 2004. Geneva’ World Health Organization; 2004. [8] World Bank list of economies (July, 2003). Washington, DC, World Bank (http://www.worldbank.org, accessed February 2004).
WHO/WFN Survey of neurological services: A worldwide perspective Aleksandar Janca a, Johan A. Aarli b, Leonid Prilipko c, Tarun Dua c,*, Shekhar Saxena c, Benedetto Saraceno c a
School of Psychiatry and Clinical Neurosciences, University of Western Australia, Perth, Australia World Federation of Neurology, and Department of Neurology, University of Bergen, Bergen, Norway Department of Mental Health and Substance Abuse, World Health Organization, Avenue Appia 20, CH-1211 Geneva 27, Switzerland b
c
Received 8 December 2005; received in revised form 27 February 2006; accepted 1 March 2006 Available online 19 April 2006
Abstract According to the findings obtained in the context of a Global Initiative on Neurology and Public Health carried out by the World Health Organization (WHO), there has been a lack of reliable and comparative data on services and other resources for neurological disorders in many parts of the world. In view of these findings and in collaboration with the World Federation of Neurology (WFN), WHO has recently organized an international Survey of Country Resources for Neurological Disorders, which involved 109 countries and covered over 90% of the world’s population. This large WHO/WFN collaborative endeavour collected expert information on a number of aspects of neurological care provision around the world including availability of neurological services in primary care; human resources for neurological disorders; sub-specialized neurological services; primary method of financing of neurological care; and disability benefits for patients with neurological disorders. The WHO/WFN Survey results clearly demonstrate that there are inadequate resources for patients with neurological disorders in most parts of the world, and highlight inequalities in the access to neurological care across different populations, and in particular in those living in low-income countries and in developing regions of the world. The key findings of the WHO/WFN Survey including their impact on delivery of neurological care around the world are presented and discussed in this paper. The entire set of WHO/WFN Survey results including numerous tables, graphs and accompanying commentaries can be found in the WHO/WFN Atlas of Country Resources for Neurological Disorders, which is available on request from WHO or at http://www.who.int/mental_health/neurology/. D 2006 Elsevier B.V. All rights reserved. Keywords: Neurological services; Neurological resources; Neurological care; Neurology and public health
1. Introduction The World Health Organization (WHO) bears a constitutional responsibility of fostering cooperation among scientific and professional groups with the aim of contributing to the advancement of global health [1]. WHO’s collaboration with numerous governmental and nongovernmental organizations has resulted in many international projects that assist health professionals and policy-makers to prioritise health needs, and design evidence-based health programmes in all areas of medicine including neurology. One of the recent examples of such a collaborative endeavour is the Global Burden of Disease study – a joint * Corresponding author. Tel.: +41 22 7913059; fax: +41 22 7914160. E-mail address: [email protected] (T. Dua). 0022-510X/$ - see front matter D 2006 Elsevier B.V. All rights reserved. doi:10.1016/j.jns.2006.03.003
project that involved WHO, the World Bank, and Harvard School of Public Health. The study results pertaining to neurological disorders demonstrated that their global health impact was significantly underestimated as these disorders accounted for 4.2% of the global burden of disease [2]. The most recent estimate of the global burden due to neurological disorders is even higher (5.2%) [3]. Another important WHO collaborative project was WHO Global Initiative on Neurology and Public Health, which revealed a lack of reliable and comparable information regarding the prevalence of, and the policies, programmes, and resources for neurological disorders in many countries around the globe [4 –6]. In an attempt to resolve this information gap, WHO has recently expanded the overall objectives of this Global Initiative and organised an international Survey of Country Resources for Neurological
30
A. Janca et al. / Journal of the Neurological Sciences 247 (2006) 29 – 34
Disorders. This large collaborative project involved WHO Headquarters and its six Regional Offices as well as the World Federation of Neurology (WFN), which is committed to improving human health worldwide by promoting prevention and care of people with neurological disorders. Over the years, WHO and WFN have worked closely on a number of projects and activities related to prevention and control of non-communicable and communicable neurological disorders. The WHO/WFN Survey of Country Resources for Neurological Disorders (hereafter WHO/WFN Survey) represents one of the most recent projects carried out in the context of this close and long-lasting international collaboration. The main objectives of the WHO/WFN Survey were to collect data and obtain expert information on: ˝ the most common neurological conditions and their distribution in primary care and specialist settings; ˝ availability of neurological procedures, treatments, and services; ˝ number and types of health professionals involved in the delivery of neurological care; ˝ characteristics of postgraduate teaching in neurology; ˝ budget for, and financing of neurological care (including the types of health insurance and disability benefits); ˝ availability, role, and involvement of national neurological associations and other nongovernmental organisations in advocacy to raise public and professional awareness of neurological disorders and their participation in the treatment, rehabilitation, and prevention of neurological disorders. The WHO/WFN Survey was conducted over 2 years – between 2001 and 2003 – during which statistics were obtained from 109 countries. In 2004, the WHO/WFN Survey findings were published within the WHO/WFN Atlas of Country Resources for Neurological Disorders [7], which provides graphic presentation and textual descriptions of the currently available neurological care, facilities and services for over 90% of the world’s population. A hard copy of the WHO/WFN Atlas is available on request from WHO. The electronic version of the entire document is available at http://www.who.int/mental_health/neurology/. This paper is based on the data contained in the WHO/ WFN Atlas and provides a summary of methods and a selection of key findings from the WHO/WFN Survey.
2. Materials and methods The WHO/WFN Survey questionnaire was drafted in English by a group of WHO and WFN consultants. It was accompanied by a glossary of terms to ensure equal comprehension of questionnaire items by the respondents belonging to different cultures and settings. The feasibility and comprehensibility of the survey questions and glossary
definitions were piloted in one developed and one developing country. The revised, final versions of the survey questionnaire and glossary were translated from English into the following official languages of WHO: Arabic, French, Russian and Spanish. Translated versions of WHO/WFN Survey questionnaires and glossary definitions were then forwarded to the official delegates of the member societies of WFN. In countries where a WFN official delegate was nonexistent or unavailable, the documents were sent to the experts in the field of neurology whose names were suggested by the respective WHO Regional Office. The WHO/WFN Survey questionnaires were obtained from 106 Member States of WHO, one Associate Member (Puerto Rico), one Special Administrative Region (Hong Kong, China), and one territory (West Bank and Gaza Strip); such a grouping represents 34.8% of the countries forming the African Region, 40% of the Americas, 85.7% of Eastern Mediterranean, 82.7% of the Europe, 54.5% of the Southeast Asia, and 33.3% of the countries constituting the Western Pacific Region. The population covered pertained to 90.1% of the world’s population: specifically 52.3% of the population in Africa, 89.3% in the Americas, 84.1% in the Eastern Mediterranean, 97.2% in Europe, 96.8% in Southeast Asia and 97.1% in the Western Pacific Region. The data collected via WHO/WFN Survey questionnaires were entered into an electronic database system and analysed using a special edition of the Stata, Version 8 software. Frequency distributions and measures of central tendency (mean, median and standard deviation) were calculated as appropriate. Countries were grouped into the above-mentioned six WHO Regions (i.e., Africa, the Americas, Eastern Mediterranean, Europe, Southeast Asia and Western Pacific) and according to four World Bank income categories using 2002 gross national income (GNI) per capita published in the World Bank List of Economies in July 2003. These GNI categories were as follows: low (US$ 735 or less), lower-middle (US$ 736– 2935), upper-middle (US$ 2936– 9075) and high-income (US$ 9076 or more) [8]. The WHO/WFN Survey data were assembled in the form of a WHO/WFN Atlas of Country Resources for Neurological Disorders [7], which contains the following sections: (1) Neurological disorders in primary care – reported frequency; (2) Neurological services in primary care; (3) Therapeutic drugs in primary care; (4) Neurological disorders in specialist care – reported frequency; (5) Neurological beds; (6) Sub-specialized neurological services; (7) Neurologists; (8) Neurological nurses; (9) Neurosurgeons; (10) Neuropaediatricians; (11) Financing for neurological services; and (12) Neurological associations and nongovernmental organisations. WHO/WFN Atlas graphic presentation included world maps with coloured coding of country data; regional maps displaying aggregate figures by WHO Regions; and bar and pie charts illustrating frequencies, medians and means. The accompanying text provided definitions of the terms used in the survey questionnaire, and a discussion of
A. Janca et al. / Journal of the Neurological Sciences 247 (2006) 29 – 34 Table 1 Neurological services in primary health care WHO region
Emergency care (%)
Follow-up treatment (%)
Africa (N = 16) Americas (N = 13) Eastern Mediterranean (N = 17) Europe (N = 41) Southeast Asia (N = 6) Western Pacific (N = 9) World
75 92.3 76.5 65.9 83.3 77.8 74
68.8 92.3 76.5 73.2 100 66.7 76
N = number of countries providing the data.
selected survey findings. In some instances, comments offered by leading experts who reviewed the draft report were also incorporated, as was the additional data and evidence obtained through literature reviews. The abovementioned WHO/WFN Atlas sections were followed by several short reviews of selected topics because of their significance for better understanding and effective management of specific neurological disorders including epilepsy, cerebrovascular diseases, headaches, dementias, Parkinson’s disease and multiple sclerosis.
3. Results 3.1. Neurological services in primary care According to the glossary definitions used in the WHO/ WFN Survey, neurological services provided in primary care denote the initial preventive and curative treatments offered within the health care system. To investigate the provision of neurological facilities at the primary health care level, the questionnaire particularly focused upon the availability of emergency care and follow-up treatments (Table 1), with each being reported as present by approximately 3/4 (74% and 76%, respectively) of the responding countries. Regionally, the Americas and Southeast Asia had the greatest source of these types of services at primary care level. Specifically, 92.3% and 83.3% of countries in the region of the Americas and Southeast Asia (respectively) provided access to emergency care, while 92.3% of the American countries and all of the Southeast Asian countries
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involved in the survey offered some type of follow-up treatment for patients with neurological disorders in primary care. Conversely, around 1/3 of the countries in the Western Pacific (33.3%) and African (31.2%) region had no followup treatment, and more than 1/3 of the participating European countries (34.1%) provided no emergency care for patients with neurological disorders in primary care. 3.2. Resources for neurological disorders The analysis of the available resources for patients with neurological disorders involved consideration of the number of neurological beds, neurologists, neurological nurses, neurosurgeons, and neuropaediatricians (Table 2). For the purpose of this survey, neurological beds were defined as hospital beds maintained only for neurological patients on a continuous basis. Worldwide, the WHO/WFN Survey found a median number of 3.6 beds to be available for every 100,000 people. This average was contrasted, however, with only 0.3 neurological beds existing for every 100,000 Southeast Asians or African patients, and more than 17 for every 100,000 European patients. Worldwide, the median number of neurologists per 100,000 people was 0.91. With the exception of Europe (with the median number of 4.84 neurologists per 100,000 people), the median number of neurologists in other WHO Regions was substantially lower with Africa and Southeast Asia having only 0.03 and 0.07 neurologists per 100,000 people, respectively. A similar regional pattern was identified with regard to the availability of neurological nurses, but the specific figures were substantially reduced: Europe had 2.43 neurological nurses per 100,000 people, Southeast Asia 0.005, and Africa 0. Although these specialist nurses were often considered to be the key members of the team which per survey definition had to provide comprehensive neurological care, training and supervision, their median number globally was just 0.11 for every 100,000 people. The median number of neurosurgeons around the world was 0.56 per 100 000 people, with only Europe having a median number above 1 (1.02). Again, Africa and Southeast Asia ranked lowest with a median number of 0.01 and 0.03 neurosurgeons per 100,000 people, respectively.
Table 2 Resources for neurological disorders (median number per 100,000 population) WHO region
Neurological beds (N = 95)
Neurologists (N = 106)
Neurological nurses (N = 82)
Neurosurgeons (N = 103)
Neuropaediatricians (N = 98)
Africa Americas Eastern Mediterranean Europe Southeast Asia Western Pacific World
0.3 1.7 1.5 17.1 0.3 2.6 3.6
0.03 0.89 0.32 4.84 0.07 0.77 0.91
0 0.14 0.13 2.43 0.005 0.32 0.11
0.01 0.76 0.37 1.02 0.03 0.39 0.56
0 0.12 0.06 0.47 0.003 0.08 0.1
N = number of countries providing the data.
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A. Janca et al. / Journal of the Neurological Sciences 247 (2006) 29 – 34
The international shortage of neuropaediatricians was present across all regions, with each WHO Region having less much less than 1 neuropaediatrician for every 100,000 people. Moreover, the WHO/WFN Survey data have revealed that those countries which have the significant proportion of children often have the poorest statistics on child neurological care resources: Africa had 0, and Southeast Asia had only 0.003 neuropaediatricians per 100,000 population. 3.3. Sub-specialized neurological services The data on sub-specialized neurological services (Table 3) were based on participants’ dichotomous categorical responses (i.e., ‘‘present’’ or ‘‘absent’’) and included availability of paediatric neurology services (this information was elicited separately from the above-reported average number of neuropaediatricians); neurological rehabilitation services; neuroradiological services; and stroke units. According to the definitions used in the survey, these sub-specialized neurological services were required to form a basis for conducting research and training, and provide highly specialised diagnoses, management and care for specific neurological conditions. Globally, 77.8% of the countries had available at least one neuroradiologic service. However, there was a substantial difference across regions: for example, all of the Southeast Asian countries reported to have such a service, compared to only 18.8% of countries in Africa. In this survey, all the countries representing the Americas, and 95.2% of those for Europe reported to have at least one paediatric neurology service; yet, such services were absent in 1/3 (33.3%) of Southeast Asian and 62.5% of African countries. In contrast, the regional distribution of neurological rehabilitation services was fairly even, but again 81.2% of African countries had no such service. Although stroke units have been shown to decrease mortality and residual disability, increase the number of independent survivors, and reduce institutionalization without increasing the cost of care, only 62% of all the participating countries
Table 3 Sub-specialized neurological services WHO region
Paediatric neurology (%)
Neurological rehabilitation (%)
Africa (N = 16) Americas (N = 14) Eastern Mediterranean (N = 18) Europe (N = 42) Southeast Asia (N = 6) Western Pacific (N = 9) World
37.5 100 68.4
18.8 78.6 73.7
Neuroradiology (%) 18.8 92.9 84.2
Stroke units (%) 31.3 64.3 26.3
Table 4 Primary method of financing neurological care by WHO regions WHO region
Out-of-pocket Tax-based Social Private (%) (%) insurance insurance (%) (%)
Africa (N = 12) Americas (N = 7) Eastern Mediterranean (N = 16) Europe (N = 36) Southeast Asia (N = 5) Western Pacific (N = 6) World
83 14 21
17 14 58
0 43 21
8 40 17 25.6
33 40 50 37.8
59 20 33 35.4
88.1 83.3
85.7 100
83.3 83.3
88.9
77.8
88.9
77.8
80.6
73.2
77.8
62
N = number of countries providing the data.
0 0 0 1.2
N = number of countries providing the data.
reported to have stroke units. The situation was found to be even bleaker in the Eastern Mediterranean and African regions where the stroke units were present in only 26.3% and 31.3% of the participating countries, respectively. 3.4. Primary method of financing neurological care Several types of financing of neurological care were considered in the context of this WHO/WFN Survey: outof-pocket payments (made by a patient or his/her family); tax-based funding (arising from general or specific taxation); social insurance; and private insurance. According to this specification, the obtained data on financing of neurological care also provided some insight into the resource utilization, quality of and access to the health care system. Table 4 shows primary methods of financing neurological care across six WHO regions. It is striking to see that in 83% of countries from Africa the out-of-pocket payments represent the primary method of financing neurological care (compared with 25.6% worldwide). Tax-based financing is most frequently reported method in the following three WHO Regions: Eastern Mediterranean (58% countries), Western Pacific (50% countries), and Southeast Asia (40%). In spite of the relatively small number of participating countries, it is notable that private health insurance as the primary method of financing of neurological care exists in 29% of countries of the Americas, but has not been reported by any of the countries across other five WHO regions. Table 5 Primary method of financing neurological care by World Bank income categories Income categories
95.2 66.7
0 29 0
Out-of-pocket Tax-based Social Private (%) (%) insurance insurance (%) (%)
High (N = 28) 3.6 Higher-middle (N = 14) 0 Lower-middle (N = 21) 19.1 Low (N = 19) 84.2
50 42.8 42.8 10.5
N = number of countries providing the data.
42.8 57.1 38.1 5.3
3.6 0 0 0
A. Janca et al. / Journal of the Neurological Sciences 247 (2006) 29 – 34
Primary methods of financing neurological care according to the World Bank income categories are given in Table 5. Like the above, it is striking to note that out-ofpocket payments represent the primary method of financing neurological care in 84.2% of low income countries. To no surprise, private health insurance has been reported as primary financing method by a small number of high income countries (3.6%). Social insurance and tax-based payments have been identified as the primary financing methods in a majority of high and middle income countries. 3.5. Disability benefits for patients with neurological disorders According to the glossary definitions used in this WHO/ WFN Survey, disability benefits are given to an individual whose functional ability is limited due to impairments caused by a disorder and is eligible for public assistance in the form of money, or benefits relating to rehabilitation, health, housing, transport, education, and workplace. Table 6 shows that 91.7% of the countries representing the Americas in this survey offer some form of monetary benefit, unlike many countries across other WHO Regions where availability of such benefits ranges from 50% to 75%. Rehabilitation and other health benefits are available in 64.9% of all countries that participated in the survey, with a wide range of availability of such benefits across six WHO Regions (50 – 100%). Similar wide range pattern exists for the availability of workplace benefits with a substantially lower global average of 37.8%. With the exception of Africa, a number of other benefits exist for patents with neurological disorders across WHO regions giving a world average of 45.9%. The above listed results clearly indicate that many countries have to advocate better provision of benefits for people with neurological disorders as it is vital for preserving their dignity and protecting their human rights.
Table 6 Disability benefits for patients with neurological disorders WHO region
Monetary benefits (%)
Rehabilitation and health benefits (%)
Africa (N = 4) Americas (N = 12) Eastern Mediterranean (N = 12) Europe (N = 35) Southeast Asia (N = 2) Western Pacific (N = 7) World (N = 74)
75 91.7 66.7
50 66.7 58.3
50 50 33.3
1 58.3 50
74.3 50
65.7 100
31.4 100
48.6 50
71.4
71.4
28.6
28.6
75.7
64.9
37.8
45.9
N = number of countries providing the data.
Workplace benefits (%)
Other benefits (%)
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4. Discussion According to the findings obtained in the context of WHO Global Initiative on Neurology and Public Health, many of the neurological disorders are chronic, progressive and constitute global public health problem. In addition, they are frequent and disabling, and they represent a significant burden on communities and societies all over the world. The extension of life expectancy and the ageing of general populations in both developed and developing countries are likely to increase the prevalence of many of these disorders. At the same time, there is insufficient information regarding the policies, programmes and services for their management in many parts of the world. Lack of this information is a major impediment at both national and international level for health planners and policy makers for planning appropriate services. It also hampers the efforts made by the nongovernmental organisations and consumer groups to improve the services [4 –6]. In an attempt to resolve the above-mentioned information gap, WHO and WFN have recently organized an international Survey of Country Resources for Neurological Disorders, which involved 109 countries and covered over 90% of the world’s population. The survey results have been included in the WHO/WFN Atlas of Country Resources for Neurological Disorders, which vividly illustrates the existence of inadequate resources for neurological disorders in most countries, and highlights inequalities of access to neurological care across populations, particularly in low-income countries and developing regions of the world. Certain limitations of this joint WHO/WFN Survey and Atlas projects have to be acknowledged before commenting on the importance and impact of their results. The data presented in the WHO/WFN Atlas represent the expert views and evaluations by only one key individual (in most cases a WFN official delegate) from each country. Furthermore, the non-availability of certain types of information from some countries caused the statistical denominators for different aspects of neurological care to vary. Finally, categorical questions requiring either a Fyes_ or Fno_ response did not allow for the identification of any specifics relating to the quality or spatial distribution of the resource in question. Despite these limitations, the WHO/WFN Survey and Atlas projects remain the most extensive investigation into the global status of neurological resources and services available to date. The results illustrate that the access to neurological care is significantly poor compared to the global burden associated with neurological disorders. The level of services and resources required to treat neurological disorders varies considerably across regions and countries. They are developed in most European and high income-group countries of the world, but greatly insufficient and disproportionate to the demand within African and low-income group countries. The WHO/WFN Survey
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and Atlas data therefore confirm the need to address the quality and distribution of neurological care around the globe. In conclusion, the data obtained through the WHO/WFN Survey and Atlas projects fill the information gaps with regard to resources for neurological care the world over. This knowledge will therefore assist health professionals and policy makers worldwide to identify areas that need urgent attention, and thus more effectively plan, develop, and provide care for people suffering from neurological disorders. It would also be beneficial in the development and implementation of the specific programmes and strategies required to improve the control of neurological disorders. The data can furthermore serve as a baseline for monitoring the provision of resources and services, allowing for comparative analyses of the available resources for neurological disorders across geographical regions and time lines. It is hoped that all those who are responsible and involved in treatment and care of people with neurological disorders will find a way to employ WHO/WFN Survey and Atlas findings in their advocacy efforts for more and better resources for neurological care.
References [1] WHO. What it is, what it does. Geneva’ World Health Organization; 1988. [2] Murray CJL, Lopez AD, editors. The global burden of disease: a comprehensive assessment of mortality and disability from diseases, injuries and risk factors in 1990 and projected to 2020Global burden of disease and injury series, vol. I. Cambridge (MA)’ Harvard School of Public Health on behalf of the World Health Organization and the World Bank; 1996. [3] The world health report 2003 – shaping the future. Geneva’ World Health Organization; 2003. [4] Janca A, Prilipko L, Costa e Silva JA. The World Health Organization’s global initiative on neurology and public health. J Neurol Sci 1997; 145:1 – 2. [5] Aarli JA. Neurology and public health: strategy and perspectives. J Neurol Sci 1997;145:3 – 4. [6] Janca A, Prilipko L, Saraceno B. A World Health Organization perspective on neurology and neuroscience. Arch Neurol 2000;57: 1786 – 8. [7] World Health Organization, World Federation of Neurology. Atlas: country resources for neurological disorders 2004. Geneva’ World Health Organization; 2004. [8] World Bank list of economies (July, 2003). Washington, DC, World Bank (http://www.worldbank.org, accessed February 2004).