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ANNE X E S
1
WHO Library Cataloguing-in-Publication Data
All rights reserved. Publications of the World Health Organization can be obtained from WHO Press, World
Health Organization, 20 Avenue Appia, 1211 Geneva 27, Switzerland (tel.: +41 22 791 3264; fax: +41 22
791 4857; e-mail: [email protected]). Requests for permission to reproduce or translate WHO publica-
tions – whether for sale or for noncommercial distribution – should be addressed to WHO Press, at the
above address (fax: +41 22 791 4806; e-mail: [email protected]).
The designations employed and the presentation of the material in this publication do not imply the expres-
sion of any opinion whatsoever on the part of the World Health Organization concerning the legal status
of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers or
boundaries. Dotted lines on maps represent approximate border lines for which there may not yet be full
agreement.
The mention of specific companies or of certain manufacturers’ products does not imply that they are
endorsed or recommended by the World Health Organization in preference to others of a similar nature
that are not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished
by initial capital letters.
All reasonable precautions have been taken by the World Health Organization to verify the information
contained in this publication. However, the published material is being distributed without warranty of any
kind, either expressed or implied. The responsibility for the interpretation and use of the material lies with
the reader. In no event shall the World Health Organization be liable for damages arising from its use.
Printed in
Designed by Tushita Graphic Vision Sàrl, CH-1226 Thônex
For further details on this project or to submit updated information, please contact:
Tarun Dua
Department of Mental Health and Substance Abuse
World Health Organization
1211 Geneva 27
Switzerland
Tel + 41 22 791 3059, Fax: +41 22 791 4160, Email: [email protected], Web: www.who.int
Paul Rompani
Multiple Sclerosis International Federation
3rd Floor Skyline House
200 Union Street
London
SE1 0LX
Tel: +44 (0) 20 7620 1911, Fax: +44 (0) 20 7620 1922, Email: [email protected], Web: www.msif.org
2
CONTE N T S
Foreword . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
Preface . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
Acknowledgements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8
Data collection. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8
Representativeness of data collected . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
Limitations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
Data organization and presentation . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
Results by themes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
1. Epidemiology – prevalence, incidence and total numbers . . . . . . . . . . . 14
2. Epidemiology – average age of onset and male/female ratio . . . . . . . . 16
3. MS organizations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18
4. Diagnosis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20
5. Information for people with MS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24
6. Support and services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27
7. Drugs and treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30
8. Human resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34
9. Disability entitlements, legislation and social insurance . . . . . . . . . . . . . 38
10. Major issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42
Summary results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 44
List of respondents . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48
Annex: Glossary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50
3
FOREWORD
Multiple sclerosis (MS) is one of the most common The data and information gathered clearly indicate that no
neurological disorders and causes of disability in young adults. one country provides adequate resources and that the avail-
Although some people with MS experience little disability ability of resources varies widely between countries both
during their lifetime, up to 60% are no longer fully ambu- within regions and throughout the world. In many low and
latory 20 years after onset, with major implications for their middle income countries where resources are available, they
quality of life and the financial cost to society. Most people are grossly inadequate. There continue to be major problems
with MS have a normal or near-normal life expectancy. In worldwide in delivering a model of care that provides truly
rare cases, MS is so malignantly progressive it is terminal. coordinated services. There is serious inequity of service pro-
Despite our awareness of the considerable impact of MS, vision both within and between countries, and an inordinate
there is a serious lack of information about the resources reliance on family and friends to provide essential care.
available to address it.
The value of the Atlas of Multiple Sclerosis (Atlas of MS) is
To meet this need, the World Health Organization (WHO) in replacing impressions and opinions with facts and figures.
and the Multiple Sclerosis International Federation (MSIF) The findings have specific implications for the work of health
undertook a major collaborative effort to determine the professionals, patient groups, the health industry and gov-
global epidemiology of MS and the resources to diagnose, ernments and will inform national and regional advocacy
inform, treat, rehabilitate, support and provide services to and development policies.
people with MS. As a part of this effort, between 2005
and 2007, 112 countries, representing 87.8% of the world We hope that the Atlas of MS will be used by people with
population, were surveyed. MS, health professionals and MS groups and organizations
to stimulate and inform campaigns for improvements in the
services and support provided to people with MS and those
with an interest in their well-being and quality of life.
4
PREFA C E
The Atlas of MS provides, for the first time, infor- The delivery of patient or person centred care, for people
mation and data on the global epidemiology of MS and the with long-term conditions, is becoming increasingly popular.
availability and accessibility of resources for people with MS The success of the implementation of this approach in the
at the country, regional, and global levels. support of people with MS varies significantly around the
world. In part, this reflects the differences in prevalence and
Knowing what resources are available in different countries therefore the relative importance afforded to the disease
helps to provide useful insights and highlight differences, within a country’s health system. In addition, diagnostic
gaps and inadequacies. Such internationally comparable equipment and treatment are expensive. The need to invest
statistics on resources enable assessment and comparison of in initiatives to help people with MS remain employed also
varies. For example, in the majority of high income countries
the performance of national health systems and the health
the costs of treatment are often borne by the government or
of the particular populations they serve.
insurance companies whereas in other regions the costs are
The Atlas of MS provides this information, considers the borne by people with MS and their families.
resulting implications and suggests ways forward in the
We are aware of several limitations of the data presented
global effort to improve the planning and delivery of health in the Atlas of MS and welcome all suggestions that would
care services. It is not only a reference, which relevant indi- help to improve the quantity and quality of data, especially
viduals, groups and organizations can consult, but it is also from countries where information on MS is scarce.
an overview of the current issues facing people with and
The Atlas of MS is a unique information and advocacy tool
affected by MS and those who work tirelessly to provide
to support initiatives to develop public policy, service provi-
support and services for them.
sion and support and ultimately to improve the quality of life
of people with MS. We hope the Atlas of MS will stimulate
further discussion, debate, research and data collection on the
epidemiology of MS and the resources available to manage it.
5
A C K N O W L EDGEMENTS
The Atlas of MS is a project of WHO and MSIF Dr Tarun Dua and Paul Rompani were responsible for com-
supervised and coordinated by Dr Tarun Dua (WHO) and pletion of the data collection, data analyses, overall project
Dr Shekhar Saxena (WHO). Dr Benedetto Saraceno pro- management and the writing of this report. Ms Rosa Semi-
vided vision and guidance to the project. nario and Ms Rosemary Westermeyer helped with the data
management and provided administrative support.
The project was carried out in close collaboration with
an MSIF Work Group coordinated by its Deputy Chief The information from various countries, areas and territories
Executive Paul Rompani. Work Group members include was provided by key persons working in the field of MS
Alan Thompson (Institute of Neurology, University Col- and/or neurology identified by MSIF, WHO regional offices,
lege London), Mario Battaglia (University of Siena), Ian the offices of WHO Representatives and the World Federa-
Douglas (MSIF), Bernadette Porter (National Hospital for tion of Neurology. The respondents also handled the many
Neurology and Neurosurgery, University College London) requests for clarification arising from the data. Contributions
and Paul Rompani (MSIF) of all these individuals has been valuable in the production
of this report. The list of respondents is included at the end
The development of the questionnaire and glossary and of the Atlas of MS.
the final report was informed by an MSIF Oversight Group
with the following members: Professor Alan J Thompson Assistance in preparing the Atlas of MS for publication was
(the United Kingdom); Professor Alexei N Boiko (Russian received from Tushita Bosonet and Chris Burgisser (graphic
Federation); Dr Fernando J. Cáceres (Argentina); Professor design), Steve Ewart (maps) and Susan Kaplan (editing).
Hans-Peter Hartung (Germany); Professor Jürg Kesselring
(Switzerland); Dr Bhim S Singhal (India); Professor Aksel The contribution of each of the team members and partners,
Siva (Turkey); and Dr Ernest Willoughby (New Zealand). together with input from many other unnamed people, has
been vital to the success of this project.
Dr Marco Garrido-Cumbrera (WHO) assisted in the develop-
ment of the survey design and questionnaire, data collection
and project management.
6
INTRODUCT I O N
At present, information on the availability of are seen between high income countries and countries with
resources and services for people with MS is scarce, frag- low or middle incomes with regard to the availability and
mented, and relates mainly to high income countries. the type of services and resources.
One of the objectives of the Atlas of MS is to start filling this The Atlas of MS does not rely solely on data gathered
information gap with the help of key informants from dif- through the Atlas of MS questionnaire. References from the
ferent fields who are working to improve the quality of life MSIF’s Principles to Promote the Quality of Life of People
of people with MS in all Member States of WHO, Associate with Multiple Sclerosis (available at www.msif.org) are
Members of WHO, and areas and territories. This project included to inform and supplement the data collected.
aimed to map resources and services by compiling and cal-
culating their distribution by regions and income levels. The primary purposes of this report are to stimulate addi-
tional systematic data gathering and to encourage the
Developing the Atlas of MS presented some unique chal- development of much needed policy, services and training.
lenges that reflect the current status of MS services in We very much hope that this initial publication will serve
countries with low or middle incomes. Large differences these purposes.
7
M E T H O D O LOGY
All the information and data contained in the For those countries with MSIF member societies or corre-
Atlas of MS have been collected in a large international sponding organizations, the country coordinator was either
study made in the two-year period from 2005 to 2007, the senior staff member or senior volunteer of the society or
which included more than 100 countries spanning all WHO the country representative on the MSIF International Medical
regions and continents. & Scientific Board. In addition, WHO regional offices were
asked to identify a key person working in the field of MS or
Data collection neurology in those countries where the MSIF has no liaison
The Atlas of MS is based on the information and data col- person or this person was not available or not responsive.
lected by WHO and MSIF. At WHO, the work was led by For countries with no MSIF connection, the country coor-
headquarters in close collaboration with the regional offices. dinators were either WHO contacts developed through
the production of the WHO Atlas: Country Resources for
The first step in the development of the Atlas of MS was Neurological Disorders, 2004, individuals identified by MSIF
to identify specific areas where information related to MS staff or members of the World Federation of Neurology.
resources and services was lacking. To obtain this informa-
tion, a questionnaire was drafted in English in consultation The country coordinators were asked to consider which
with a group of people from WHO and MSIF. A glossary of individuals, groups and organizations in their country
terms used in the questionnaire was also prepared to ensure would be best placed to complete the eight sections of the
that the questions were understood in the same way by dif- questionnaire. The country coordinators were requested
ferent respondents. Subsequently, the draft questionnaire to coordinate the completion of the questionnaire, mak-
and glossary were reviewed by selected experts. The result- ing use of all possible sources of information available to
ing questionnaire was developed further, in consultation with them. All respondents were asked to follow the glossary
the Atlas of MS Oversight Group, and pilot tested and neces- definitions closely, to maintain uniformity and comparabil-
sary changes were made. The definitions used in the glossary ity of the information received. Throughout this process,
are working definitions for the purpose of the Atlas of MS the Atlas of MS Project Work Group responded to ques-
project, and do not constitute official WHO definitions. tions and requests for clarification. Repeat requests for
completion of the questionnaire were sent to the country
The final version of the questionnaire covered a wide range of coordinator in cases where there was a delay in returning
issues broken down into the following eight separate sections: the completed questionnaire. In the case of incomplete or
◆ epidemiology
internally inconsistent information, the respondents were
of MS
contacted to provide further information or clarification.
◆ MS groups and organizations Where appropriate, documents were requested to support
◆ support available to people affected by MS completed questionnaires.
8
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METHODOLO G Y
es
fic ion
Of eg icas
al R
an mer gion
g ion s ric
Re area Af the A a Re gion n
HO f si Re gio n
HO the rve W ion o ast A ean e o
W nd e E p n R egi e
a ey s g
Re uth- Euro anea fic R Offic
t h O
H OS o O e r r a c i a l
W H H it P n
W ed ern gio
W
r n M
e st Re
ste O W
Ea H
H O W
W
The income group of the countries was based on the 2002 Representativeness of data collected
gross national income (GNI) per capita according to the
World Bank list of economies, July 2003. The GNI groups Completed questionnaires were received from 111 of the
were as follows: low income (US$ 905 or less), lower mid- 193 WHO Member States and one Special Administrative
dle income (US$ 906–3595), upper middle income (US$ Region (Hong Kong), all of which are henceforth referred
3596–11 115) and high income (US$ 11 116 or more). to as countries for the sake of convenience. Of these 112
countries, 66 (59%) completed the original long version of
The data was analysed using Stata (special edition) version the questionnaire whereas 46 (41%) completed the shorter
9 software. Values for continuous variables were grouped version.
into categories based on distribution. Frequency distribu-
tions and measures of central tendency (mean, medians and The data were collected from 44 countries in the European
standard deviations) were calculated as appropriate. Region (84.6%), 20 countries in the Region of the Americas
(57.1%), 18 countries in the African Region (39.1%), 16
The published literature regarding some of the themes was countries in the Eastern Mediterranean Region (76.2%),
also reviewed and the evidence summarized. The results 9 countries in the Western Pacific Region (33.3%), and 4
of the analysis were presented in a draft report which was countries in the South-East Asia Region (36.4%).
reviewed by leading experts in the field of MS and regional
advisers of the six WHO regions, and their comments were
incorporated.
s
av
e Ye o
h o h for N
s w ata S
n trie ed d of M
u
Co rovid tlas
p eA
th
9
rn est R
ste O W
M E T H O D O LOGY E a H
HO W
W
s
av
e Ye o
h o h for N
s w ata S
n trie ed d of M
u
Co rovid tlas
p eA
th
In terms of population covered, the data pertain to 87.8% While attempts have been made to obtain all the required
of the world population; 97.1% of the population in the information from all countries, in some countries this
Americas, 94.2% in Europe, 93.7% in the Western Pacific, was not possible. Hence, the denominator for the vari-
89.8% in the Eastern Mediterranean, 80.2% in South-East ous themes is different and this has been indicated in each
Asia and 70.3% in Africa. theme. The most common reason for missing data was
either the non-availability of the information in the country
Limitations or the lack of a relevant or appropriate informant willing or
The most important limitation of the dataset is that in 67 able to provide a professional opinion.
of the 112 countries a single key person was the source of The data regarding the epidemiology of MS represent
all information. Although most respondents had access to an estimate and were not collected and calculated using
numerous official and unofficial sources of information and stringent epidemiological research methods. The data were
were able to consult neurologists within the country, the compared with the published evidence available from vari-
data received should still be considered as reasonably, and ous countries.
not completely, reliable and accurate. In some instances the
data are the best estimates by the respondents. In spite of Certain questions were framed in such a way that the
this limitation, the Atlas of MS is the most comprehensive response could be either “yes” or “no”. Although this facili-
compilation of MS resources in the world ever attempted. tated a rapid gathering of information, it failed to reflect
differences in coverage and quality. Respondents may have
Because the sources of information in most countries were
replied positively to the question of availability of services
the key persons working in the field of MS, the dataset
in the country even if only a very limited number of such
mainly covers countries where there are MS societies, neu-
facilities were available in a few large cities. Furthermore,
rologists or other experts with an interest in MS or neurol-
the response does not provide information about distribu-
ogy. It is therefore likely that the Atlas of MS gives an over tion across rural or urban settings or across different regions
positive view of neurological resources in the world, if we within the country.
consider the lack of experts or health professionals with an
interest in MS or neurology, which suggests that there are
likely to be very few or no resources in the remaining 82
(42%) of the WHO Member States.
10
METHODOLO G Y
It is possible that definitions for various terms vary from Selected salient findings from analysis of the data are
country to country. As a result, countries may have had described for each of the specific themes. No attempt has
difficulties in interpreting the definitions provided in the been made to provide a description of all the possible find-
glossary. While all possible measures have been taken to ings arising out of the data analyses presented.
compile code and interpret the information given by coun-
tries using uniform definitions and criteria, it is possible that Limitations specific to each theme should be kept in mind
some errors may have occurred during data handling. when interpreting the data and their analyses. Some impli-
cations of the findings and/or recommendations for further
Data organization and presentation development of resources for MS are highlighted.
The data included in the Atlas of MS are organized in 10 In addition to the information collected as a part of the
broad themes. The graphic displays include maps of the Atlas project, the Atlas of MS also makes reference to the
world with colour-coded country data. Regional maps show MSIF publication Principles to Promote the Quality of Life
aggregate figures by WHO regions. Bar and pie charts are of People with Multiple Sclerosis, which can be accessed at
provided to illustrate frequencies, medians and means as www.msif.org.
appropriate.
11
The publisher has intentionally left this page blank.
RESULTS BY THEM E S
13
1 E P I D E M I O L OGY
T O TA L N U MBERS, PREVALENCE AND INCIDENCE
Limitations
◆ Comparability of different prevalence and incidence rates procedures, the degree of public awareness about MS
across diverse populations can be difficult to achieve and the investigators’ zeal and resources.
because of various factors that may interfere: the choice
◆ In the Atlas of MS, figures from most of the countries
of diagnostic criteria; the different study methodologies;
refer to local epidemiological studies, reported in the
and the studies being done at different times, in different
scientific literature. National or regional registers are only
geographical areas, with variability in population sizes,
available in a few countries.
age structures, ethnic origins and composition of the
groups studied. ◆ In some cases the figures provided are up to date while
others may be underestimated, being based on the last
◆ Complete case ascertainment depends on access to medi-
available epidemiological studies, which may be some
cal care, local medical expertise, the number of neurolo-
time ago.
gists, accessibility to and availability of new diagnostic
Salient findings
◆ Globally,the median estimated prevalence of MS is 30 (0.9) and Africa (0.1). No countries in South-East Asia
per 100 000 (with a range of 5–80) (Figure 1.1). provided data.
◆ Regionally, the median estimated prevalence of MS is ◆ By income category, the median estimated incidence
greatest in Europe (80 per 100 000), followed by the of MS is greatest in high income countries (3.6 per 100
Eastern Mediterranean (14.9), the Americas (8.3), the 000), followed by upper middle (2.2), lower middle (1.1)
Western Pacific (5), South-East Asia (2.8) and Africa (0.3) and low income countries (0.1).
(Figure 1.2).
◆ The countries reporting the highest estimated incidence
◆ By income category, the median estimated prevalence of of MS include Croatia (29 per 100 000), Iceland (10),
MS is greatest in high income countries (89 per 100 000), Hungary (9.8), Slovakia (7.5), Costa Rica (7.5), United
followed by upper middle (32), lower middle (10) and Kingdom (6), Lithuania (6), Denmark (5.9), Norway (5.5)
low income countries (0.5) (Figure 1.3). and Switzerland (5).
◆ The countries reporting the highest estimated prevalence ◆ The total estimated number of people diagnosed
of MS include Hungary (176 per 100 000), Slovenia with MS, reported by the countries that responded, is
(150), Germany (149), United States of America (135), 1 315 579 (approximately 1.3 million) of whom approxi-
Canada (132.5), Czech Republic (130), Norway (125), mately 630 000 are in Europe, 520 000 in the Americas,
Denmark (122), Poland (120) and Cyprus (110). 66 000 in the Eastern Mediterranean, 56 000 in the
Western Pacific, 31 500 in South-East Asia and 11 000
◆ Globally,
the median estimated incidence of MS is 2.5 per
in Africa. The reader should keep in mind that there are
100 000 (with a range of 1.1–4).
no data for some of the mega countries such as Russian
◆ Regionally, the median estimated incidence of MS is great- Federation, where the total number of people has been
est in Europe (3.8 per 100 000), followed by the Eastern suggested to be quite high in anecdotal reports.
Mediterranean (2), the Americas (1.5), the Western Pacific
Implications
◆ Thisstudy definitively confirms that MS is a global disease ◆ Typically, our results confirmed the well established sug-
and not a disease solely of the more developed “northern” gestion that there are strong geographical patterns to the
and “western” countries. disease and that the frequency of MS varies by geograph-
ical region throughout the world, increasing with distance
◆ No country that responded to the survey was free of MS
from the equator in both hemispheres.
although the survey did show relatively wide variations in
both incidence and prevalence. An improved understand- ◆ The unequal distribution of important diagnostic tools
ing of both the genetic and environmental factors influ- (e.g. MRI scanners) is likely to result in under-recording
encing the disease is likely to lead to an understanding of of MS in many low-income countries. This effect is also
why this is the case. likely to be reinforced by either ignorance among profes-
sionals or the belief, in some of those countries that MS
◆ The disease is less common among non-white individuals
does not occur in these countries.
than whites but MS was detected in all the countries sur-
veyed, and comments from the respondents in a number ◆ The lack of data in approximately two thirds of the coun-
of countries in Africa suggested that they were finding tries that responded reflects the lack of published reports
more MS as the availability and accessibility of diagnostic in medical literature regarding the epidemiology of MS.
facilities, particularly MRI, improved.
14
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