665
665
665
47
EPILEPSY
Epilepsy is one of the most common serious Evidence exists that 60–70% of people with epilepsy could
disorders of the brain, affecting some 50 million people lead normal lives if properly treated with antiepileptic drugs
worldwide. It is unique among these disorders in that its (AEDs) (53). Some of them will need to continue with medi-
symptoms can be completely controlled in the majority of cation for life but, for others, the antiepileptic medication
affected individuals by inexpensive medications or cost- may eventually be stopped without seizures recurring. For
effective surgical procedures, and many forms of epilepsy some patients with intractable epilepsy, neurosurgical treat-
can be prevented by appropriate public health interven- ment may be successful.
tions. Epilepsy accounts for 1% of the global burden of
disease, determined by the number of productive life- Of the burden of epilepsy worldwide, 80% is in the devel-
years lost as a result of disability or premature death (50). oping world, where 80% of people with epilepsy receive no
treatment at all (52). In most of these regions, misconcep-
Among primary disorders of the brain, this burden ranks
tions, stigma, and discrimination are greater obstacles to the
with depression and other affective disorders, Alzheimer’s
well-being of people with epilepsy than lack of adequate
disease and other dementias, and substance abuse; among
health-care facilities. These problems can be solved rela-
all medical conditions, it ranks with breast cancer in women
tively inexpensively through education of patients, their
and lung cancer in men.
families, the general public, health-care providers and gov-
Approximately one in 10 people can expect to have at ernment agencies, as well as through improved access to
least one epileptic seizure during a normal lifespan, but one effective treatments. A Global Campaign Against Epilepsy,
seizure is not epilepsy. Only a third of the people who expe- a joint effort of the International League against Epilepsy
rience a seizure have an enduring brain disturbance that (ILAE), the International Bureau for Epilepsy (IBE) and
causes recurrent seizures and therefore warrants a diagnosis WHO, is currently in progress in order to reduce the treat-
of epilepsy. Despite epilepsy being so common, the reported ment gap for epilepsy and promote acceptance of people
figures vary widely. The incidence is generally taken to be with this disorder by bringing epilepsy “out of the shad-
between 40 and 70 per 100 000 people per year in indus- ows” (54). The aim of the Campaign is to provide better
trialized countries, with estimates of 100–190 per 100 000 information about epilepsy and its consequences and to
people per year in developing countries (51, 52). The preva- assist governments and those concerned with epilepsy to
lence is between 5 and 40 per 1000 persons (51). Parasitic, reduce the burden of the disorder.
viral and bacterial infections have been suggested as impor-
Much more basic and clinical research is necessary to devel-
tant factors in the cause of epilepsy in developing countries
op new approaches for prevention, diagnosis, and treat-
(52). Other important causes include brain damage at birth
ment, and to devise cost-effective ways to bring currently
caused by asphyxia, infections, and brain trauma resulting
available approaches to the developing areas of the world
from accidents. Some of the public health policies which
where limited resources and tropical conditions remain a
may help in modifying these risk factors include better peri-
major obstacle to adequate health care.
natal care, strategies to control head injury, better hygiene
to decrease neurocysticercosis, and immunization. In the
affluent countries, reduction of stroke by modifying the risk
factors may lessen the incidence of epilepsy.
48
CEREBRO VASCULAR DISEA S E S
Stroke is the second leading cause of death after consumption. This knowledge will allow for institution of
ischemic heart disease worldwide, with an estimated 5.5 primary and secondary prevention measures. It is also of
million subjects dying from stroke every year. Two thirds of great importance to introduce stroke awareness campaigns
these deaths occur in countries with low resources. Approxi- for the public, to promote healthy lifestyles and demon-
mately 80% of patients survive the acute phase of stroke: strate the need for risk factor modification. Stroke should be
50–75% of the survivors are left with varying degrees of regarded as one of the preventable cardiovascular diseases,
chronic disability, thus making stroke a leading cause of dis- and stroke prevention should be a global effort.
ability in adults.
Data from the literature shows that organized care in a
Hospital care, long-term care, complete or partial working stroke unit is the most effective way of reducing long-term
incapacity, and community support – all of these factors case fatality, long-term disability and the need for institu-
cause enormous costs for the patients, their families, com- tionalization (57). The benefits of a stroke unit come from
munities and the health-care system. There are different its focus on coordinated multidisciplinary care, nursing inte-
estimates of costs of management of stroke per patient in gration and early rehabilitation. Specialization of care repre-
various regions. In Australia, the European Union and North sented by interest and expertise in stroke rehabilitation, and
America, the mean total cost of stroke management for also education and training of staff, patients and caregivers,
the first three months is approximately US$ 14 000. The are of great importance. Efforts need to be made to popu-
average cost per surviving day is US$ 260 (55). In general, larize and promote stroke unit care, especially in countries
more than 70% of costs are directed for covering hospi- with low and medium levels of resources.
talization, less than 20% for rehabilitation, and the rest for
Important endeavours have been undertaken recently to
chronic care facilities. Lifetime costs per stroke patient range
improve the knowledge of stroke epidemiology world-
approximately between US$ 60 000 and US$ 230 000.
wide. The Surveillance and Risk Assessment Division of the
These costs should be regarded in the context of the epi-
Population and Public Health Branch of Health, Canada – a
demiological data, as the number of stroke survivors in a
WHO Collaborating Centre for Surveillance of Cardiovas-
society translates directly into the actual economic burden
cular Diseases – developed a database of worldwide demo-
of stroke.
graphic data on cardiovascular and cerebrovascular disease
Surveys performed before 1990 show that the worldwide mortality and morbidity. Moreover, the World Federation
crude prevalence rate of stroke in all age groups ranges of Neurology and the International Stroke Society, in col-
from 4 to 20 per 1000 population. More recently published laboration with WHO, have initiated the development of a
data from population-based studies show less variability stroke component of the WHO Global Noncommunicable
between geographical regions, with the crude prevalence Disease Infobase, which collects information on stroke
rate ranging from 5 to 10 per 1000 population (56). prevalence, incidence, mortality and case fatality based on
Some gender differences can be observed, as the stroke published data. Another WHO-initiated activity is an inter-
prevalence rate is lower in women than in men. Despite national stroke surveillance system: the STEPwise approach,
the stable rates, demographic estimates point towards an which will form a framework for surveillance and data col-
important increase of the number of strokes in the near lection in order to achieve comparability of data over time
future – especially in South America and Asia. and between different countries (58, 59). All these efforts
aim to improve prevention and control of stroke and to
Based on these simple data one can roughly estimate the facilitate the planning of health services. A joint effort of
life-time costs of all strokes as millions of dollars in a medi- health-care professionals, nongovernmental organizations
um-sized European country, thus highlighting the impor- and governmental bodies is the key to controlling epidemics
tance of stroke as a target for public health campaigns. of stroke.
However, stroke-related costs should not be regarded from
a perspective of a high-income country. With the increasing
burden of stroke in low-income countries the same magni-
tude of resources would be required to fulfil the needs of
patients and to cover the disability-related loss of productiv-
ity.
49
H E AD A C H E
Headache disorders are ubiquitous. Their lifetime year because of migraine alone. A recent United States
prevalence in populations in which they have been meas- study measured indirect costs in a managed-care population
ured is over 90%. Migraine is most studied, although still at over US$ 4500 per sufferer per year. Tension-type head-
not fully in all regions of the world. It mostly affects people ache and chronic daily headache may together cause losses
of working age but does trouble children as well. Euro- of similar magnitude. In the 15 European Union countries
pean and American studies show that 6–8% of men and prior to enlargement, the annual cost of all headache has
15–18% of women experience migraine every year (60). been estimated at € 10 000-30 000 million.
A similar pattern is seen in Central and South America: in
Therefore, while headache rarely signals serious underlying
Puerto Rico, for example, 6% of men and 17% of women
illness, it is high among causes of consulting both general
are affected. Major studies are still to be conducted in India,
practitioners and neurologists. Over a period of five years,
but anecdotal evidence suggests similar levels of migraine
one in six patients aged 16–65 years in a large general prac-
promoted by Indian lifestyle factors. In Japan it is estimated
tice in the United Kingdom consulted because of headache.
to affect 8.4% of adults. Migraine appears less prevalent,
A survey of neurologists found that up to one third of all
but still common, elsewhere in Asia (3% of men and 10%
their patients consulted for headache – more than for any
of women) and in Africa (3–7% in community-based stud-
other single complaint.
ies). Again in these areas, major studies have yet to be con-
ducted. The higher rates in women everywhere (2–3 times Despite headache being a common occurrence, there is
those in men) are hormonally driven. good evidence that large numbers of people troubled by
it do not receive effective health care. In many countries,
Tension-type headache (TTH) is the most common head-
headache conditions are not recognized as diseases but only
ache disorder (61). Most is episodic, and this subtype
as self-limiting and unimportant symptoms, deserving no
affects two-thirds of adult males and over 80% of females
allocation at all of resources. A consensus conference organ-
in developed countries, although few seriously. In its chronic
ized by the American and International Headache Societies
subtype, in contrast, it is present on more days than not
concluded that migraine is underdiagnosed and undertreat-
and is disabling. Chronic tension-type headache overlaps
ed throughout the world.
with and is sometimes indistinguishable from other forms
of chronic daily headache, some of which are unrelentingly Nevertheless there are effective treatments. It is possible
present throughout every day. Estimates of the prevalence to alleviate much of the symptom burden of headache and
of this group of conditions in Europe and the United States thereby mitigate both the humanitarian and the financial
are as high as 1 in 25 of the adult population (62). costs. Crucially, the common headache disorders require no
special investigation and their diagnosis and management
Not only is headache painful but, depending on its inten-
call only for skills generally available to physicians. Most
sity and other symptoms that may accompany it, it is also
headache can be optimally managed in primary care, if the
disabling. Migraine affects people particularly during their
following barriers are removed:
productive years and, in a survey in the United States, 80%
of people with migraine reported disability because of it. ◆ lackof knowledge, among health-care providers, of
Extrapolation from migraine prevalence and attack inci- headache disorders and how to treat them;
dence data suggests that 3000 migraine attacks occur every
◆ poor awareness among the general public, so that head-
day for each million of the general population so it is unsur-
aches are often trivialized as a minor annoyance and an
prising that, worldwide, migraine is 19th among all causes
excuse to avoid responsibility (stigmatization), and among
of years of life lost to disability (YLDs) (63). As well as
headache sufferers who are unaware that effective treat-
suffering directly from its symptoms, people with migraine
ments exist;
consistently score highly on scales of general physical and
mental ill-health. Chronic tension-type headache and other ◆ failureof governments to acknowledge the burden of
forms of chronic daily headache are associated with long- headache and to recognize that the costs of treating it
term morbidity. are small in comparison with the huge savings that might
be made (for example, by reducing lost working days) if
Repeated headache attacks, and often the constant fear of resources were allocated to do so appropriately.
the next, damage family life, social life and employment.
For example, social activity and work capacity are reduced The key to successful health care for headache in most areas
in almost all migraine sufferers and in 60% of tension-type of the world is therefore education. This is at the heart of the
headache sufferers. The financial cost of headache arises Global Campaign to Reduce the Burden of Headache (64).
partly from direct treatment costs but much more from loss
of work-time and productivity. In the United Kingdom, for
example, 25 million workdays or schooldays are lost every
50
PARKINSO N'S DISE AS E
Parkinson’s disease occurs worldwide: it affects all For delivery of neurological care to people with Parkinson’s
ethnic groups and socioeconomic classes. Besides the disa- disease, adequate human resources and other facilities
bling motor symptoms, patients have non-motor symptoms are required. These are regrettably deficient, especially in
such as anxiety and depression. The Global Parkinson’s the developing regions. For instance, there are only about
disease Survey in six countries demonstrated that depres- 850 neurologists for the care of over 1000 million people
sion in Parkinson’s disease is a significant factor affecting in India (1 neurologist for 1.2 million inhabitants). These
the health-related quality of life (65). Although there is no neurologists are mainly located in the cities, whereas nearly
cure for Parkinson’s disease, there have been advances in two thirds of India’s population reside in rural areas. It is
its management through drugs, rehabilitative measures and therefore necessary to seek the help of primary care physi-
surgery. To achieve health for all, it is essential that we have cians for the care of patients. Medical education should
a true appraisal of the epidemiological aspects of Parkin- be suitably modified so that graduate physicians are able
son’s disease and resources available in each region. to recognize primary symptoms of Parkinson’s disease and
impart education about this illness to patients and their
Most epidemiological studies have shown an estimated inci- families. They should be able to initiate treatment with the
dence ranging from 16 to 19 per 100 000 people per year appropriate anti-Parkinsonian drug and refer suitable cases
(66), while estimated crude prevalence is 160 per 100 000 to community hospitals in semi-urban areas or to large
people per year (67). There are regional variations which urban hospitals. There is also a great need to expand the
may, in part, be attributable to different methods of case- support services and to have more nurse specialists, social
finding, diagnostic criteria and the age of the population. workers, paramedical staff and rehabilitation centres. Vari-
There is clearly a need for well-defined epidemiological ous nongovernmental support organizations are working
studies, especially from the developing regions of the world. in this area to increase the awareness of this disease and its
Parkinson’s disease poses a significant public health burden, management.
which is likely to increase in the coming years. Along with
other neurodegenerative diseases such as Alzheimer’s dis-
ease, Parkinson’s disease is expected to surpass cancer as
the second most common cause of death by the year 2040.
The direct and indirect costs for the care of Parkinsonian
patients, including cost of drug treatment (about US$ 1100
million worldwide) can be substantial (68). The incidence
and prevalence of Parkinson’s disease increase with advanc-
ing age, occurring in about 1% of people over the age of
65 years. With increase in life expectancy, future demo-
graphic projections predict a larger population over the age
of 60 years in the developing regions, with a corresponding
increase in the number of Parkinson patients.
51
DEMENTIA
Dementia is a syndrome characterized by a pro- Primary prevention should probably focus upon risk factors
gressive global deterioration in intellectual function. Alzhe- for vascular disease, including hypertension, smoking, type II
imer’s disease is the commonest pathology, accounting for diabetes, and hyperlipidaemia. The epidemic of smoking in
50% to 75% of cases. Recent estimates for numbers of developing countries and the high and rising prevalence of
people with dementia worldwide suggest that 18–25 mil- type II diabetes in Asia are particular causes of concern. More
lion persons were affected in 2000 and that this number work is needed to identify further modifiable risk factors.
will double to 32–40 million by 2020 (69, 70). It is largely
a disease of older persons: only 2% of cases are under 65 Achieving progress with dementia care has much to do
years of age. After this age, the prevalence doubles with with creating the climate for change. Lack of awareness,
every five-year increment in age. Prevalence varies very widespread among policy-makers, clinicians and the general
little between developed countries: 1% for 60–64 years, public, is a key public health problem with important conse-
1.5% for 65–69 years, 3% for 70–74 years, 6% for 75–79 quences:
years, 13% for 80–84 years, 24% for 85–89 years, 34% for ◆ affected persons do not seek help; even if they do,
90–94 years, and 45% for those aged 95 years or over (70). health-care services tend not to meet their needs;
Demographic ageing proceeds apace in China, India and ◆ dementia is stigmatized; for example, sufferers can be
Latin America. In the 30 years up to 2020, the oldest sector excluded from residential care and denied admission to
of the population will have increased by 200% in develop- hospital facilities;
ing countries compared with 68% in the developed world ◆ there
is no constituency to lobby government or policy-
(2). By 2020, two thirds of all people over 60 (and, presum- makers;
ably, a similar proportion of all those with dementia) will be
◆ familiesare the main caregivers, but they lack support or
living in developing countries (69). In the developing world,
however, there is more uncertainty as to the frequency of understanding from others.
dementia, with few studies and widely varying estimates
Population level interventions are needed. National Alzhe-
(71). In general, prevalence and incidence are lower than
imer Associations help to raise awareness and create a
in the developed countries (71). Early onset cases are again
framework for positive engagement between clinicians,
rare, though this may be changing in parts of the world
researchers, caregivers and people with dementia.
where HIV/AIDS is endemic.
Primary health-care services have an essential role to play in
Dementia is one of the major causes of disability in later
prevention, detection and management. Clinic-based serv-
life. The consensus estimated disability weight for dementia
ices providing acute care do not meet this need. For many
applied in the global burden of disease report was higher
low-income countries the most cost-effective approach will
than that for almost any other condition with the excep-
be community primary care services supporting, educating
tion of spinal cord injury and terminal cancer. Among older
and advising family caregivers, supplemented by subsidized
people, dementia was the most burdensome neuropsychi-
home nursing or home-care workers. Day care and residen-
atric disorder accounting for more than half of all disability-
tial respite care are more expensive, but nevertheless basic
adjusted life years in this domain of morbidity (2).
to a community’s needs, particularly for more advanced
People with dementia are heavy consumers of health serv- dementia. Residential care is unlikely to be a government
ices, but in developed countries most direct costs arise from priority. Even in some of the poorer countries, however,
community and residential care. In the United Kingdom private nursing and residential care homes are opening to
these costs amount to US$ 8000 million, or US$ 13 000 meet the new demand (for example, in China and India). If
per person with dementia (72). The economic burden is government policies are well formulated, the inevitable shift
unevenly distributed; families from the poorest countries are of resource expenditure towards older people can be pre-
particularly likely to use expensive private medical services dicted and its consequences mitigated (76).
and to be spending more than 10% of per capita GNP on
health care (73). Worldwide, family caregivers are the cor-
nerstone of support for people with dementia. They experi-
ence significant psychological, practical and economic strain
(73, 74). Dementia care is particularly time intensive because
of the need for close supervision. Many caregivers need to
give up or cut back upon work in order to care. When the
full costs of their care inputs were calculated, in the United
States they amounted to US$ 18 000 million annually (75).
52
M ULTIPLE SCLEROS IS
Multiple sclerosis is the most common neurologi- As long as the etiology of multiple sclerosis remains
cal disorder in younger adults of Caucasian origin. The etiol- unknown, a causal therapy or effective prevention is not
ogy is still unknown but pathogenetic steps leading to the possible. Introduction of new disease-modifying therapies
characteristic histological findings of perivascular inflamma- such as beta-interferon or glatiramer acetate may alter the
tion and focal demyelination, as well as astrocyte scarring disease course, especially in the relapsing-remitting form, by
and axonal loss, have become better understood. reducing the number of attacks by about a third and reduc-
ing the accumulation of lesions as seen on MRI, and by
Clinically the disease course is most often relapsing-remit- influencing the impact of the disease on disability. Rehabili-
ting, with exacerbations lasting on average a few weeks to tation still remains the most effective element in the overall
a few months. In the long run, over decades, this course management of multiple sclerosis. Clinical as well as basic
most often turns (for unknown reasons) into a secondary research are urgently needed in a coordinated fashion in
progression. The cases which remain relapsing-remitting are order to find the etiology of this still enigmatic disease, with
probably the ones which are benign (10–15%). Another the goal of finding more effective treatments or preventing
form of the disease is primary progressive, equally frequent it altogether.
in females and males with probably less inflammatory com-
ponents. In relapsing-remitting and secondary progressive
forms the disease is twice as common in females than in
males.
53
T R A I N I N G IN N EU R OLOG Y
Most care for disorders of the nervous system is these differences spring naturally from local needs, and are
provided not by neurologists but by general physicians and not necessarily undesirable. There are wide regional differ-
other primary health-care workers, especially in developing ences in the prevalence of various neurological disorders. A
countries where neurologists may be few or nonexistent. core curriculum in neurology should be influenced by local
Adequate pregraduation training in neurology is needed conditions, particularly for training in neuroepidemiology,
everywhere so that general physicians can identify and treat prevention of neurological disorders, changing patterns of
disorders of the nervous system, which are major contribu- disease, and the cost-effective use of diagnostic and thera-
tors to the global burden of disease. peutic resources.
Undergraduate medical curricula should include the epide- The length of training programmes in neurology varies from
miology and prevention of the neurological disorders that place to place. Areas of subspecialty training in neurology
are most prevalent in the region where graduates will prac- include stroke, movement disorders, epilepsy, neurore-
tise. Some of the commonest neurological disorders such habilitation, pain, and clinical neurophysiology, and such
as stroke and epilepsy are preventable to some degree, for programmes are generally available only in the wealthiest
example by adequate treatment of hypertension in the first countries. They usually require one to two years, but accu-
case and by eradication of neurocysticercosis in the other. rate data about the length and content of such programmes
The beneficial effects of neurorehabilitation and the careful are lacking. Whether adequate neurology training might be
management of chronic neurological diseases should also be done in less time in certain countries or regions would be a
included in pregraduate curricula. useful subject for study. Shorter programmes would be less
costly and might require fewer faculty members.
To keep physicians abreast of changing patterns of neu-
rological disorders (such as the increasing incidence of The available data demonstrate that in many low-income
cerebrovascular disease and dementia in developing coun- and middle-income countries there may be no neurolo-
tries), continuing medical education in neurology should be gists, or as few as one neurologist for every 2 million people
readily available to all primary care physicians. Particularly (47). Such countries generally do not have the conventional
in countries where neurospecialists are few, and most care academic foundations for postgraduate neurology training
of neurological disorders falls to the primary care physician programmes, and their neurologists receive training else-
or other health-care professionals, the educational role of where. For small countries, the model of specialty training
the neurologist should include providing continuing medical abroad may be suitable, as long as the training corresponds
education for primary care doctors (79). Continuing medical to the disease profile and technological milieu of the coun-
education for neurologists is widely available in wealthier try where the neurologist will practise. The establishment
countries through national and international neurological or improvement of neurology training programmes is desir-
societies. For neurologists in developing countries, regional able in larger countries, however, to produce graduates
neurological societies can offer educational programmes who will work locally or in the region. The organization and
that focus attention on neurological disorders endemic evaluation of new training programmes could be facilitated
to the area, and foster connections with neurologists in by international linkages with various nongovernmental
wealthier countries. organizations.
Neurologists everywhere are recognized by their expertise in In some areas the construction of regional training pro-
certain areas such as basic neurosciences, the neurological grammes could avoid duplication of costly resources and
history and examination, and diagnosis and management allow pooling of resources. Modern technology would facili-
of neurological disorders. Physicians in some countries may tate the use of long-distance teaching, sharing of teach-
identify themselves as neurologists after minimal specialty ing materials, and establishment of research ties. In some
training, whereas in other countries several years of post- regions it might be desirable to replace or supplement the
graduate education, followed by successful completion of a traditional four-year postgraduate neurology programme
specialty examination, are necessary. Through their national with a shorter training programme for general physicians
professional organizations, neurologists serve as advisers to with a special interest in clinical neurology.
national governments in over 70% of countries. Where this
is the case, neurology curricula should also include some
training in public health and in health-care delivery.
54
55
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57
L I S T O F R E SPON D EN T S
Country, Country,
territory or area Name territory or area Name
58
LIST O F RESPO NDE N TS
Country, Country,
territory or area Name territory or area Name
Saudi Arabia Saleh M. Al Deeb West Bank and Gaza Strip Mazen I. El-Hindi
Fahmi M. Al-Senani
Yemen Hesham Awn
Senegal Ndiaye Mansour
Zambia Gretchen L. Birbeck
Serbia and Montenegro Slobodan Apostolski
59