ANNE X E S

1
 WHO Library Cataloguing-in-Publication Data

Atlas multiple sclerosis resources in the world 2008.

1.Multiple sclerosis - ethnology. 2.Multiple sclerosis - epidemiology. 3.Multiple sclerosis - classification.

4.Disabled persons. 5.Atlases. I.World Health Organization. II.Multiple Sclerosis International Federation.

ISBN 978 92 4 156375 8 (NLM classification: WL 360)

© World Health Organization 2008

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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
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endorsed or recommended by the World Health Organization in preference to others of a similar nature
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the reader. In no event shall the World Health Organization be liable for damages arising from its use.

Printed in
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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: duat@who.int, 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: paul@msif.org, 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

The way forward . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 46

List of respondents . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48

Annex: Glossary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50

3
 FOREWORD
Multiple sclerosis (MS) is one of the most common
neurological disorders and causes of disability in young adults.
Although some people with MS experience little disability
during their lifetime, up to 60% are no longer fully ambu-
latory 20 years after onset, with major implications for their
quality of life and the financial cost to society. Most people
with MS have a normal or near-normal life expectancy. In
rare cases, MS is so malignantly progressive it is terminal.
Despite our awareness of the considerable impact of MS,
there is a serious lack of information about the resources
available to address it.
To meet this need, the World Health Organization (WHO)
and the Multiple Sclerosis International Federation (MSIF)
undertook a major collaborative effort to determine the
global epidemiology of MS and the resources to diagnose,
inform, treat, rehabilitate, support and provide services to
people with MS. As a part of this effort, between 2005
and 2007, 112 countries, representing 87.8% of the world
population, were surveyed.
Benedetto Saraceno
Director
Department of Mental Health and Substance Abuse
World Health Organization
4
The data and information gathered clearly indicate that no
one country provides adequate resources and that the avail-
ability of resources varies widely between countries both
within regions and throughout the world. In many low and
middle income countries where resources are available, they
are grossly inadequate. There continue to be major problems
worldwide in delivering a model of care that provides truly
coordinated services. There is serious inequity of service pro-
vision both within and between countries, and an inordinate
reliance on family and friends to provide essential care.
The value of the Atlas of Multiple Sclerosis (Atlas of MS) is
in replacing impressions and opinions with facts and figures.
The findings have specific implications for the work of health
professionals, patient groups, the health industry and gov-
ernments and will inform national and regional advocacy
and development policies.
We hope that the Atlas of MS will be used by people with
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.
Alan Thompson
Chairman
International Medical and Scientific Board
Multiple Sclerosis International Federation

The Atlas of MS provides, for the first time, infor-
mation and data on the global epidemiology of MS and the
availability and accessibility of resources for people with MS
at the country, regional, and global levels.
Knowing what resources are available in different countries
helps to provide useful insights and highlight differences,
gaps and inadequacies. Such internationally comparable
statistics on resources enable assessment and comparison of
the performance of national health systems and the health
of the particular populations they serve.
The Atlas of MS provides this information, considers the
resulting implications and suggests ways forward in the
global effort to improve the planning and delivery of health
care services. It is not only a reference, which relevant indi-
viduals, groups and organizations can consult, but it is also
an overview of the current issues facing people with and
affected by MS and those who work tirelessly to provide
support and services for them.
Tarun Dua and Shekhar Saxena
Department of Mental Health and Substance Abuse
World Health Organization
PREFA C E
The delivery of patient or person centred care, for people
with long-term conditions, is becoming increasingly popular.
The success of the implementation of this approach in the
support of people with MS varies significantly around the
world. In part, this reflects the differences in prevalence and
therefore the relative importance afforded to the disease
within a country’s health system. In addition, diagnostic
equipment and treatment are expensive. The need to invest
in initiatives to help people with MS remain employed also
varies. For example, in the majority of high income countries
the costs of treatment are often borne by the government or
insurance companies whereas in other regions the costs are
borne by people with MS and their families.
We are aware of several limitations of the data presented
in the Atlas of MS and welcome all suggestions that would
help to improve the quantity and quality of data, especially
from countries where information on MS is scarce.
The Atlas of MS is a unique information and advocacy tool
to support initiatives to develop public policy, service provi-
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.
Paul Rompani
Deputy Chief Executive
Multiple Sclerosis International Federation
5
 A C K N O W L EDGEMENTS
The Atlas of MS is a project of WHO and MSIF
supervised and coordinated by Dr Tarun Dua (WHO) and
Dr Shekhar Saxena (WHO). Dr Benedetto Saraceno pro-
vided vision and guidance to the project.
The project was carried out in close collaboration with
an MSIF Work Group coordinated by its Deputy Chief
Executive Paul Rompani. Work Group members include
Alan Thompson (Institute of Neurology, University Col-
lege London), Mario Battaglia (University of Siena), Ian
Douglas (MSIF), Bernadette Porter (National Hospital for
Neurology and Neurosurgery, University College London)
and Paul Rompani (MSIF)
The development of the questionnaire and glossary and
the final report was informed by an MSIF Oversight Group
with the following members: Professor Alan J Thompson
(the United Kingdom); Professor Alexei N Boiko (Russian
Federation); Dr Fernando J. Cáceres (Argentina); Professor
Hans-Peter Hartung (Germany); Professor Jürg Kesselring
(Switzerland); Dr Bhim S Singhal (India); Professor Aksel
Siva (Turkey); and Dr Ernest Willoughby (New Zealand).
Dr Marco Garrido-Cumbrera (WHO) assisted in the develop-
ment of the survey design and questionnaire, data collection
and project management.
6
Dr Tarun Dua and Paul Rompani were responsible for com-
pletion of the data collection, data analyses, overall project
management and the writing of this report. Ms Rosa Semi-
nario and Ms Rosemary Westermeyer helped with the data
management and provided administrative support.
The information from various countries, areas and territories
was provided by key persons working in the field of MS
and/or neurology identified by MSIF, WHO regional offices,
the offices of WHO Representatives and the World Federa-
tion of Neurology. The respondents also handled the many
requests for clarification arising from the data. Contributions
of all these individuals has been valuable in the production
of this report. The list of respondents is included at the end
of the Atlas of MS.
Assistance in preparing the Atlas of MS for publication was
received from Tushita Bosonet and Chris Burgisser (graphic
design), Steve Ewart (maps) and Susan Kaplan (editing).
The contribution of each of the team members and partners,
together with input from many other unnamed people, has
been vital to the success of this project.

At present, information on the availability of
resources and services for people with MS is scarce, frag-
mented, and relates mainly to high income countries.
One of the objectives of the Atlas of MS is to start filling this
information gap with the help of key informants from dif-
ferent fields who are working to improve the quality of life
of people with MS in all Member States of WHO, Associate
Members of WHO, and areas and territories. This project
aimed to map resources and services by compiling and cal-
culating their distribution by regions and income levels.
Developing the Atlas of MS presented some unique chal-
lenges that reflect the current status of MS services in
countries with low or middle incomes. Large differences
INTRODUCT I O N
are seen between high income countries and countries with
low or middle incomes with regard to the availability and
the type of services and resources.
The Atlas of MS does not rely solely on data gathered
through the Atlas of MS questionnaire. References from the
MSIF’s Principles to Promote the Quality of Life of People
with Multiple Sclerosis (available at www.msif.org) are
included to inform and supplement the data collected.
The primary purposes of this report are to stimulate addi-
tional systematic data gathering and to encourage the
development of much needed policy, services and training.
We very much hope that this initial publication will serve
these purposes.
7
 M E T H O D O LOGY
All the information and data contained in the
Atlas of MS have been collected in a large international
study made in the two-year period from 2005 to 2007,
which included more than 100 countries spanning all WHO
regions and continents.
Data collection
The Atlas of MS is based on the information and data col-
lected by WHO and MSIF. At WHO, the work was led by
headquarters in close collaboration with the regional offices.
The first step in the development of the Atlas of MS was
to identify specific areas where information related to MS
resources and services was lacking. To obtain this informa-
tion, a questionnaire was drafted in English in consultation
with a group of people from WHO and MSIF. A glossary of
terms used in the questionnaire was also prepared to ensure
that the questions were understood in the same way by dif-
ferent respondents. Subsequently, the draft questionnaire
and glossary were reviewed by selected experts. The result-
ing questionnaire was developed further, in consultation with
the Atlas of MS Oversight Group, and pilot tested and neces-
sary changes were made. The definitions used in the glossary
are working definitions for the purpose of the Atlas of MS
project, and do not constitute official WHO definitions.
The final version of the questionnaire covered a wide range of
issues broken down into the following eight separate sections:
◆ epidemiology
of MS
◆ MS groups and organizations
◆ support available to people affected by MS
◆ diagnosis of MS
◆ management of MS
◆ treatment of MS
◆ quality of life of people with MS
◆ issues in MS care.
The next step of the process was to identify the most rele-
vant and appropriate person in each country to be invited to
act as “country coordinator” to be the focal point for gather-
ing information and data within that country and organizing
the completion of the eight sections of the questionnaire.
8
For those countries with MSIF member societies or corre-
sponding organizations, the country coordinator was either
the senior staff member or senior volunteer of the society or
the country representative on the MSIF International Medical
& Scientific Board. In addition, WHO regional offices were
asked to identify a key person working in the field of MS or
neurology in those countries where the MSIF has no liaison
person or this person was not available or not responsive.
For countries with no MSIF connection, the country coor-
dinators were either WHO contacts developed through
the production of the WHO Atlas: Country Resources for
Neurological Disorders, 2004, individuals identified by MSIF
staff or members of the World Federation of Neurology.
The country coordinators were asked to consider which
individuals, groups and organizations in their country
would be best placed to complete the eight sections of the
questionnaire. The country coordinators were requested
to coordinate the completion of the questionnaire, mak-
ing use of all possible sources of information available to
them. All respondents were asked to follow the glossary
definitions closely, to maintain uniformity and comparabil-
ity of the information received. Throughout this process,
the Atlas of MS Project Work Group responded to ques-
tions and requests for clarification. Repeat requests for
completion of the questionnaire were sent to the country
coordinator in cases where there was a delay in returning
the completed questionnaire. In the case of incomplete or
internally inconsistent information, the respondents were
contacted to provide further information or clarification.
Where appropriate, documents were requested to support
completed questionnaires.
Eventually completed questionnaires were received from 64
countries. Another attempt was made to contact countries
that had not responded through MSIF member societies and
corresponding organizations, and contacts identified through
WHO Regional Offices and World Federation of Neurology.
In order to improve representation across all WHO regions,
a shorter questionnaire was developed for completion by
contacts in those countries where little is known about MS
and/or there is low prevalence of MS. As a result of the
extra effort, data was gathered from 112 countries.
An electronic database was generated and received data
was entered. Both quantitative and qualitative data was
entered using suitable codes. Population figures were taken
from the World Health Report 2006 (WHO, 2006). Coun-
tries were grouped into the six WHO regions (Africa, the
Americas, Eastern Mediterranean, Europe, South- East Asia
and Western Pacific).
 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 gi o
W
rn M
e st Re
ste O W
Ea H
HO W
W

The income group of the countries was based on the 2002
gross national income (GNI) per capita according to the
World Bank list of economies, July 2003. The GNI groups
were as follows: low income (US$ 905 or less), lower mid-
dle income (US$ 906–3595), upper middle income (US$
3596–11 115) and high income (US$ 11 116 or more).
The data was analysed using Stata (special edition) version
9 software. Values for continuous variables were grouped
into categories based on distribution. Frequency distribu-
tions and measures of central tendency (mean, medians and
standard deviations) were calculated as appropriate.
The published literature regarding some of the themes was
also reviewed and the evidence summarized. The results
of the analysis were presented in a draft report which was
reviewed by leading experts in the field of MS and regional
advisers of the six WHO regions, and their comments were
incorporated.
Representativeness of data collected
Completed questionnaires were received from 111 of the
193 WHO Member States and one Special Administrative
Region (Hong Kong), all of which are henceforth referred
to as countries for the sake of convenience. Of these 112
countries, 66 (59%) completed the original long version of
the questionnaire whereas 46 (41%) completed the shorter
version.
The data were collected from 44 countries in the European
Region (84.6%), 20 countries in the Region of the Americas
(57.1%), 18 countries in the African Region (39.1%), 16
countries in the Eastern Mediterranean Region (76.2%),
9 countries in the Western Pacific Region (33.3%), and 4
countries in the South-East Asia Region (36.4%).

s
av
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Co rovid tlas
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th

9

M E T H O D O LOGY
HO
W
av
e Ye o
h o h for
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%
of the world population; 97.1% of the population in the
Americas, 94.2% in Europe, 93.7% in the Western Pacific,
89.8% in the Eastern Mediterranean, 80.2% in South-East
Asia and 70.3% in Africa.
Limitations
The most important limitation of the dataset is that in 67
of the 112 countries a single key person was the source of
all information. Although most respondents had access to
numerous official and unofficial sources of information and
were able to consult neurologists within the country, the
data received should still be considered as reasonably, and
not completely, reliable and accurate. In some instances the
data are the best estimates by the respondents. In spite of
this limitation, the Atlas of MS is the most comprehensive
compilation of MS resources in the world ever attempted.
Because the sources of information in most countries were
the key persons working in the field of MS, the dataset
mainly covers countries where there are MS societies, neu-
rologists or other experts with an interest in MS or neurol-
ogy. It is therefore likely that the Atlas of MS gives an over
positive view of neurological resources in the world, if we
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
rn est R
ste O W
E a H
W
s
N
While attempts have been made to obtain all the required
information from all countries, in some countries this
was not possible. Hence, the denominator for the vari-
ous themes is different and this has been indicated in each
theme. The most common reason for missing data was
either the non-availability of the information in the country
or the lack of a relevant or appropriate informant willing or
able to provide a professional opinion.
The data regarding the epidemiology of MS represent
an estimate and were not collected and calculated using
stringent epidemiological research methods. The data were
compared with the published evidence available from vari-
ous countries.
Certain questions were framed in such a way that the
response could be either “yes” or “no”. Although this facili-
tated a rapid gathering of information, it failed to reflect
differences in coverage and quality. Respondents may have
replied positively to the question of availability of services
in the country even if only a very limited number of such
facilities were available in a few large cities. Furthermore,
the response does not provide information about distribu-
tion across rural or urban settings or across different regions
within the country.

It is possible that definitions for various terms vary from
country to country. As a result, countries may have had
difficulties in interpreting the definitions provided in the
glossary. While all possible measures have been taken to
compile code and interpret the information given by coun-
tries using uniform definitions and criteria, it is possible that
some errors may have occurred during data handling.
Data organization and presentation
The data included in the Atlas of MS are organized in 10
broad themes. The graphic displays include maps of the
world with colour-coded country data. Regional maps show
aggregate figures by WHO regions. Bar and pie charts are
provided to illustrate frequencies, medians and means as
appropriate.
Since the distribution of most of the data is skewed, the
median has been used to depict the central tendency of the
various variables. Where the range of data is presented it is
always the interquartile range.
METHODOLO G Y
Selected salient findings from analysis of the data are
described for each of the specific themes. No attempt has
been made to provide a description of all the possible find-
ings arising out of the data analyses presented.
Limitations specific to each theme should be kept in mind
when interpreting the data and their analyses. Some impli-
cations of the findings and/or recommendations for further
development of resources for MS are highlighted.
In addition to the information collected as a part of the
Atlas project, the Atlas of MS also makes reference to the
MSIF publication Principles to Promote the Quality of Life
of People with Multiple Sclerosis, which can be accessed at
www.msif.org.
11
 RESULTS BY THEM E S

The following pages present

the results of the Atlas of MS
by themes

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
across diverse populations can be difficult to achieve
because of various factors that may interfere: the choice
of diagnostic criteria; the different study methodologies;
and the studies being done at different times, in different
geographical areas, with variability in population sizes,
age structures, ethnic origins and composition of the
groups studied.
◆ Complete case ascertainment depends on access to medi-
cal care, local medical expertise, the number of neurolo-
gists, accessibility to and availability of new diagnostic
Salient findings
◆ Globally,the median estimated prevalence of MS is 30
per 100 000 (with a range of 5–80) (Figure 1.1).
◆ Regionally, the median estimated prevalence of MS is
greatest in Europe (80 per 100 000), followed by the
Eastern Mediterranean (14.9), the Americas (8.3), the
Western Pacific (5), South-East Asia (2.8) and Africa (0.3)
(Figure 1.2).
◆ By income category, the median estimated prevalence of
MS is greatest in high income countries (89 per 100 000),
followed by upper middle (32), lower middle (10) and
low income countries (0.5) (Figure 1.3).
◆ The countries reporting the highest estimated prevalence
of MS include Hungary (176 per 100 000), Slovenia
(150), Germany (149), United States of America (135),
Canada (132.5), Czech Republic (130), Norway (125),
Denmark (122), Poland (120) and Cyprus (110).
◆ Globally,
the median estimated incidence of MS is 2.5 per
100 000 (with a range of 1.1–4).
◆ Regionally, the median estimated incidence of MS is great-
est in Europe (3.8 per 100 000), followed by the Eastern
Mediterranean (2), the Americas (1.5), the Western Pacific
Implications
◆ Thisstudy definitively confirms that MS is a global disease
and not a disease solely of the more developed “northern”
and “western” countries.
◆ No country that responded to the survey was free of MS
although the survey did show relatively wide variations in
both incidence and prevalence. An improved understand-
ing of both the genetic and environmental factors influ-
encing the disease is likely to lead to an understanding of
why this is the case.
◆ The disease is less common among non-white individuals
than whites but MS was detected in all the countries sur-
veyed, and comments from the respondents in a number
of countries in Africa suggested that they were finding
more MS as the availability and accessibility of diagnostic
facilities, particularly MRI, improved.
14
procedures, the degree of public awareness about MS
and the investigators’ zeal and resources.
◆ In the Atlas of MS, figures from most of the countries
refer to local epidemiological studies, reported in the
scientific literature. National or regional registers are only
available in a few countries.
◆ In some cases the figures provided are up to date while
others may be underestimated, being based on the last
available epidemiological studies, which may be some
time ago.
(0.9) and Africa (0.1). No countries in South-East Asia
provided data.
◆ By income category, the median estimated incidence
of MS is greatest in high income countries (3.6 per 100
000), followed by upper middle (2.2), lower middle (1.1)
and low income countries (0.1).
◆ The countries reporting the highest estimated incidence
of MS include Croatia (29 per 100 000), Iceland (10),
Hungary (9.8), Slovakia (7.5), Costa Rica (7.5), United
Kingdom (6), Lithuania (6), Denmark (5.9), Norway (5.5)
and Switzerland (5).
◆ The total estimated number of people diagnosed
with MS, reported by the countries that responded, is
1 315 579 (approximately 1.3 million) of whom approxi-
mately 630 000 are in Europe, 520 000 in the Americas,
66 000 in the Eastern Mediterranean, 56 000 in the
Western Pacific, 31 500 in South-East Asia and 11 000
in Africa. The reader should keep in mind that there are
no data for some of the mega countries such as Russian
Federation, where the total number of people has been
suggested to be quite high in anecdotal reports.
◆ Typically, our results confirmed the well established sug-
gestion that there are strong geographical patterns to the
disease and that the frequency of MS varies by geograph-
ical region throughout the world, increasing with distance
from the equator in both hemispheres.
◆ The unequal distribution of important diagnostic tools
(e.g. MRI scanners) is likely to result in under-recording
of MS in many low-income countries. This effect is also
likely to be reinforced by either ignorance among profes-
sionals or the belief, in some of those countries that MS
does not occur in these countries.
◆ The lack of data in approximately two thirds of the coun-
tries that responded reflects the lack of published reports
in medical literature regarding the epidemiology of MS.
 EPIDEMIOLO G Y 1
TOTAL NUMBERS, PREVALENCE AND INCIDE N C E

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1.2 in 9
N= ric
a
Af as
e ric
Am e an 89
ran e
di ter rop
e Eu ia
rn
M As
st ic
ste E a cif
Ea uth Pa d
S o er n orl n
est W tio
W p ula ies
o tr
0 0 p coun 32
0
0, of
r 10 ups
e o
S p e gr 10 30
M m
e of nco 0.5
nc t i
v ale eren
e f
Pr dif w
i n 93 Lo
1.3 N= dle
d
mi le
w er idd
Lo r m gh
pe Hi
Up orl
d
W

15
2 E P I D E M I O L OGY
AVERAGE AGE OF ONSET AND MALE/FEMALE RATIO

Salient Findings
◆ Globally,the interquartile range for age of onset of MS
symptoms is between 25.3 and 31.8 years with an aver-
age age of onset of 29.2 years (Figure 2.1).
◆ Regionally,the average age of onset is lowest in the
Eastern Mediterranean (26.9) followed by similar average
age of onset in Europe (29.2), Africa (29.3), the Americas
(29.4), and South-East Asia (29.5) and highest in Western
Pacific (33.3) (Figure 2.2).
◆ By income category, the estimated average age of onset
is 28.9 years for the low and upper middle income coun-
tries and 29.5 and 29.3 years for high and lower middle
income countries (Figure 2.3).
◆ Globally, the median estimated male/female ratio is 0.5,
or 2 women for every 1 man (with a range of 0.40 to
0.67) (Figure 2.4).
◆ Regionally, the median estimated male/female ratio is
lowest in Europe (0.6), the Eastern Mediterranean (0.55)
and the Americas (0.5) and highest in South-East Asia
(0.4), Africa (0.33) and the Western Pacific (0.31) (Figure
2.5).
◆ By income category, the median estimated male/female
ratio is same in all income group of countries (0.50) (Fig-
ure 2.6).

Implications
◆ The data support the findings that MS is more common
among women than men and that symptoms appear at
around 30 years of age, when people are most economi-
cally active and when they would be most likely to be
◆ Although
starting or supporting a family.
◆ Itis thus important that policy-makers fully understand
the implications of lost production, as well as of the
treatment regimes, on the full costs of MS, so that the
value of policies targeting MS can be properly and fully
accounted for.
the sample size is relatively small, the find-
ings also suggest that the age of onset is lower in many
developing countries and this might be suggestive of an
avenue for future research.

0
<2 5
0 -2 0
2 -3
t 25 -35
ns
e 30 >35
fo ) on
o ati
ge ars or m
g e a n ye inf
era (i No
Av f MS
2.1 o 96
N=

16
 EPIDEMIOLO G Y 2
AVERAGE AGE OF ONSET AND MALE/FEMALE RATIO

io -1
rat 0.5 .5
ale -0 .3
m 0.3 5-0
/fe . 2 .25
0 -0 0.2
ale S 0 . 2 < n
M fM tio
2.4 o =98
or ma
N inf
29.3 No
29.4
26.9
29.2
29.5
S 33.3
o fM
et 29.2
o ns nd 28.9
of s a )
a ge gion ears 29.5
e re y 28.9
e rag HO d (in ric
a
Av W orl Af as
29.3
2.2 in e w ric 29.2
th =96 A me e an
N an
iterr rop
e
ed Eu ia
M As nt
e rn ast ific fere s)
ast th
E ac i f r
E u P
orl
d n d ea w
So ern S i (in y Lo
est W M s le
W
t of trie m idd
se n er le
on f cou dd
f L ow r mi gh
o o pe Hi
ge ups Up d
a
e gro orl
a g W
er e
Av com
2.3 i n 96
ld N=
S wor
M
f he
oo dt
r ati s an 0.5
le n 0.5
ma regio
0.6
/ f e 0.5
al e O
M WH 0.33 0.5
2.5 i n 9 8 0.4 0.5
N =
0.31 0.5
0.5 S s 0.5
o f M roup
io e g
rat
a le ncom
m i
a e /fe rent ies
ric a l e r
Af
c as M diff unt
eri 2.6 in f co Lo
w
Am ea
n o =98 le
er ran e N idd
dit rop rm dd
le
e Eu ia we i
nM As Lo rm gh
ste
r ast ific pe Hi
Ea th
E
P ac Up orl
d
u d
So ern orl W
est W
W

17
3 M S O R G A NISATIONS

Salient Findings
◆ Globally,an MS group or organization exists in 73.2% of ◆ Regionally, an MS group or organization exists in 95% of
the countries that responded (Figure 3.1). the countries that responded in the Americas, followed
by Europe (93.2%), South-East Asia (75%), the Western
◆ By income category, an MS group or organization exists
Pacific (66.7%), the Eastern Mediterranean (50%) and
in 92.1% of all high income countries followed closely
Africa (22.2%) (Figure 3.3).
by upper middle income countries (91.3%), and then by
lower middle (76.7%) and least in low income countries
(14.3%) (Figure 3.2).

s
Ye o
N n
o
ati
f o rm
up in
gro No
S n
fM ni
c e o zatio
en ani try
ist
Ex r org oun
3.1 o ec 2
th 11
N=

91.3%
76.7% 92.1%

p
rou ps
S g grou 73.2%
M
an me
i th inco
w t
es n
n tri ffere 14.3%
u
o nd i
c
of n i
t a ge atio
n iz s
rce an rie
Pe r org unt Lo
w
3.2 o f co 2 le
o =11 dd
N mi
r le
we idd
Lo er
m gh ld
p Hi up wor
Up orl
d r o
W S g the
a n M and
th ns
s wi egio
ie r
ntr HO
c ou n W
of n i 73.2%
t a ge atio
n iz
rce an
Pe r org 2
3.3 o 11
18 N= 22.2% d
95% orl
W
 MS ORGANISATIO N S 3

Implications
◆ Many countries in the world have no patient-driven sup- ◆ The lack of an MS group or organization in a country will
port for people with MS, with low income countries being affect its reporting on cases of MS, as such groups are well
significantly less likely than high income countries to have placed to provide qualitative as well as quantitative data.
such groups. Inevitably this will have an impact on people
with MS in those countries, as MS groups or organizations
usually play an important role in distributing information
and providing support and services.
s
Ye o
◆ There is no firm relationship between support and inci- N n
o
ati
dence, with, for example, the Eastern Mediterranean f o rm
p in
rou
having thegsecond-highest incidence but lying fifth in pro- No
S in
Mpatient-driven
visionofof o n MS support.
n ce izati
e an try
ist
Ex r org oun
3.1 o ec 2
th 11
N=

91.3%
76.7% 92.1%

p
rou ps
S g grou 73.2%
M
an me
i th inco
w t
es n
n tri ffere 14.3%
u
o nd i
c
of n i
t a ge atio
n iz s
rce an rie
Pe r org unt Lo
w
3.2 o f co 2 le
o =11 dd
N mi
r le
we idd
Lo er
m gh ld
p Hi up wor
Up o rl
d ro
W S g the
a n M and
th ns
s wi egio
ie r
ntr HO
c ou n W
of n i 73.2%
ta ge atio
n iz
rce an
Pe r org 2
3.3 o 11
N= 22.2% d
95% orl
W
50%
a
ric
No Af as
93.2%
eric 75%
Am n
n ea 66.7%
rra e
d ite u rop
e E ia
M As
s tern E ast ific
Ea th- P ac
u
So ern
est
W

19
4 DIAGNOSIS

Salient Findings
◆ The McDonald Criteria are the diagnostic criteria, most
commonly used in 66% of the countries that responded,
followed by the Poser Criteria used in 31% and the Schu-
macher Criteria used in 3% of countries (Figure 4.1).
◆ Regionally, the McDonald criteria are the criteria most
commonly used in the Eastern Mediterranean (83.3%)
followed by the Americas (70.6%), Europe (70%), South-
East Asia (66.7%), Africa (50%) and the Western Pacific
(42.9%) (Figure 4.2).
◆ Regionally, the Poser criteria are the criteria most common-
ly used in the Western Pacific (57.1%) followed by Africa
(35.7%), South-East Asia (33.3%), Europe (30%), the
Americas (29.4%) and the Eastern Mediterranean (8.3%).
◆ The McDonald criteria are the criteria most commonly used
in 79.4% of high income countries, 65% of upper middle
income countries, 56.5% of lower middle income countries
and 52.9% of low income countries (Figure 4.3).
◆ The Poser criteria are the criteria most commonly used in
43.5% of lower middle income countries, 35% of upper
middle income countries, 29.4% of lower income coun-
tries and 20.6% of high income countries.
◆ MRI is available in all (100%) of the countries that
responded; spinal tap (lumbar puncture) is available in
96.9% of countries and evoked potentials in 95.3%.
◆ Globally, the median estimated number of MRI machines
is 0.12 per 100 000 (with an interquartile range of 0.04–
0.43) (Figure 4.4).
◆ Regionally, the median estimated number of MRI
machines per 100 000 is greatest in the Western Pacific
(0.35), followed by Europe (0.31), the Eastern Mediterra-
nean (0.17), the Americas (0.08), South-East Asia (0.03)
and Africa (0.004) (Figure 4.5).
◆ By income category, the median estimated number of
MRI machines per 100 000 is greatest in high income
countries (0.76 per 100 000), followed by upper middle
(0.15), lower middle (0.07) and low income countries
(0.01) (Figure 4.6).
◆ Globally,the median time from initial presentation to MRI
is between 1 week and 6 weeks with a range of 0 to 144
weeks (12 years).
◆ The median time from initial presentation to diagnosis is
between 4 weeks and 48 weeks with a range of 1 week
to 480 weeks (40 years).
◆ 31% of the countries that responded noted that MS is
diagnosed in their country without MRI.

ed
a us
eri
rit
ticc
n os
iag
Sd
tM
nes Schumacher 3%
mo
Poser 31%
m
Co 94 McDonald 66%
4.1 N=

20
 DIAGNOSIS 4

14.3%
35.7% 70.6%
50% 29.4%
0%
83.3%

8.3%
8.3%
70%
30%
a 0%
ric
Af 66.7%
33.3%
0%
c as
eri 42.9%
Am 57.1%
n 0%
ea
rran 66%
a ld ite
eri ed
c rit wor M
c e ern e
sti th Ea
st rop
g no and Eu
ia s
S d gion
M re 31%
st As
ia
o ne HO ast
mm in W uth
E
Co sed So
4.2 u 94 ic
N= acif
nP
ester 3%
ld
na W
Do orl
d
c er
M a ch W
um 17.7%
S ch
29.4% 56.5%
52.9% 43.5%
0%
65%
35%
0%
79.4%

20.6%
ed 0%
a us ies
i r
ter nt
66%
w
c cri cou Lo
t i f
os s o
i a gn roup
Sd eg dd
le
s t M ncom rm
i
ne t i we
m mo eren Lo
f
Co dif dd
le 31%
4.3 in =94 i
N rm
pe
Up
ld gh
o na Hi
cD h er 3%
M ac
um
ch d
S orl
W

21
4 DIAGNOSIS

Implications
◆ Although there are diagnostic criteria available to support
the neurologist, unlike for many other diseases, there is
still no single straightforward specific “positive or nega-
tive” diagnostic test for MS and none of the tests avail-
able are 100% conclusive. The clinical diagnosis of MS is
heavily reliant on the skill of the neurologist in taking and
interpreting the patient’s medical history, conducting a
neurological examination and performing and interpreting
MRI. Typically, a neurologist will diagnose MS by a com-
bination of observing a person’s symptoms, and ruling
out other possibilities.
◆ Because the time of initial diagnosis is particularly stress-
ful, it deserves special attention from health care and
other providers.
◆ Clinicaldata alone may be sufficient for a diagnosis of
MS. If an individual has experienced two temporally dis-
tinct neurological episodes characteristic of MS, and also
has consistent abnormalities on physical examination,
a diagnosis of MS can be made with no further testing,
once other diseases have been excluded.
◆ The availability of MRI technology and broad adoption of
common diagnostic criteria, predominantly the McDonald
Criteria, has made it easier for neurologists to give a diag-
nosis of clinically definite MS. However, the wide variance
in the availability and accessibility of MRI technology
means that the time between the initial presentation and
the point at which the person gets scanned (which usually
means a definite diagnosis can be made) varies widely.
◆ MS is not always easy to diagnose in its early stages.
Typically, people who have been diagnosed with clinically
definite MS will have been through several diagnostic
stages which can be an unsettling, frightening and psy-
chologically traumatic experience for the individual and
his or her family. As the data suggest, this process is often
drawn out over months or years.
◆ The results presented highlight how inequalities in global
wealth impact on the provision of diagnostic services for
people with MS, and how difficult and long the path to
diagnosis is for many of them.

.04
-0 9
0.0 -0.0 30
0 5 0. 00
0 . 0- .
0.1 31-1 >1
0. on
mati
o r
inf
No
s
ine
a ch ion
m t
RI pula
M o
of p
b er ,000
m 0
Nu er 10 2
4.4 p =10
N

0.31 0.03
0.35

0 rld
0 ,00 e wo 0.17
r 10 th
22 pe nd
i n es ns a 0.08
c h egi o
a 0.004
 DIAGNOSIS 4

Relevant quality of life principles

◆ 2.2.1. Physicians must be sensitive to the major psycho- ◆ 2.2.2. At the time of the initial diagnosis, people with MS
logical, social, financial, vocational and medical impact of must have access to information about MS that is specific
telling a person that she or he has MS. Patients must have to newly .04
0 -0 diagnosed
9 individuals, together with information
adequate time to ask questions of the physician. Newly
.
on 0local 0.0 .national
-and 30 medical, support, rehabilitation, and
5 0
0.0 .10- 1.00 1
diagnosed patients should be referred to the national MS life-planning
0 -
services.
1 >
0 .3 n o
ti
society and to an MS nurse specialist or other health pro-
orma
fessional with MS treatment and counselling experience. inf
No
s
ine
a ch ion
m t
RI pula
f M p o
ro 0
m be 0,00
Nu er 10 2
4.4 p =10
N

0.31 0.03
0.35

0 rld
0 ,00 e wo 0.17
r 10 th
pe n d
i n es ns a 0.08
c h eg i o
ma r 0.004
RI HO
M W
of in
b er ion ric
a 0.12
u m lat Af s
N opu 2 ca
p 0 eri
4.5 1 m an
N= A ne
rra e
ite rop
ed Eu ia
M As
stern a st ic
Ea
E cif
uth Pa d
S o e r n orl 0.76
est W
W
0
,00 s
1 00 roup
er g
e s p ome
in c 0.15
ch t in
I ma eren 0.07
R iff 0.01
o f M in d
e r on
mb ati ries
Nu opul unt Lo
w 0.12
4.6 p f co 2 le
0
o =1 idd
N rm le
we idd
Lo r m gh
pe Hi
Up orl
d
W

23
5 I N F O R M AT ION FOR THE PEOPLE WITH MS

Limitations
◆ The question on the most common topic of printed infor- ◆A limitation of all data relating to “availability” of a
mation was answered by only 61 countries – the actual resource is that whether or not a resource is available in a
figures are likely to be lower. country has no bearing on the access to that resource.

Salient Findings
◆ The most common means of providing information to peo- ◆A website is available in 81.6% of high income countries,
ple with MS (by MS organizations, health professionals and 77.3% of upper middle income countries, 31% of lower
pharmaceutical companies) in those countries that respond- income countries and 9.5% of low income countries.
ed is through the distribution of printed material (70%)
◆A telephone helpline is available in 79.1% of the European
(Figure 5.3), followed by a telephone helpline (53.7%), a
countries that responded, followed by 68.4% in the Amer-
website (53.6%) and a newsletter (49.1%) (Figure 5.1).
icas, 44.4% in the Western Pacific, 26.7% in the Eastern
◆ Printed material is available in 97.7% of the European Mediterranean, 25% in South-East Asia and 5.9% of the
countries that responded followed by 89.5% of those in African countries that responded (1 out of 17).
the Americas, 55.6% in the Western Pacific, 50% South-
◆A telephone helpline is available in 84.2% of high
East Asia, 40% in the Eastern Mediterranean and 16.7%
income countries, 68.2% of upper middle income coun-
of African countries.
tries, 37% of lower income countries and 4.8% of low
◆ Printed material is available in 94.7% of high income income countries
countries, 86.4% of upper middle income countries,
◆A newsletter is available in 77.3% of the European coun-
65.5% of lower income countries and 14.3% of low
tries that responded, followed by 55.6% in the Western
income countries (Figure 5.2).
Pacific, 47.4% in the Americas, 25% in South-East Asia,
◆ The most common topic of printed information is general 20% in the Eastern Mediterranean and 5.6% of Africa
information, provided in 91.8% of the countries that countries that responded.
responded, followed by symptoms (83.6%), treatment
◆A newsletter is available in 81.6% of high income coun-
(78.7%), lifestyle (diet, exercise, daily living) (55.7%),
tries, 68.2% of upper middle income countries, 24.1% of
rehabilitation (45.9%), family issues (children and preg-
lower income countries and 4.8% of low income countries.
nancy) (42.6%), alternative or complementary therapy
(29.5%), research (29.5%), employment (24.6%) and
communication (hearing and speech) (16.4%).
◆A website is available in 84.1% of the European coun-
tries that responded, followed by 47.4% of those in the
Americas, 44.4% in the Western Pacific, 33.3% in the
Eastern Mediterranean, 25% in South-East Asia and
11.1% of African countries.

24
 INFORMATION FOR THE PEOPLE WITH M S 5

Implications
◆ Our survey again highlights the significant inequali-
ties in the provision of basic and more specific forms of
information. For example, printed material is available
in nearly 95% of high income countries, but in less than
15% of low income countries. It is interesting to note the
relatively high provision of information via the Internet,
which may be a reflection of the flexibility of the medium,
the age group concerned and their embrace of technol-
ogy. It is also probable that in countries where MS is less
commonly diagnosed, the absence of readily available
information is likely to further depress incidence figures.
◆ People with MS seek and use relevant, current, and specific
information to help them cope with their disease, retain
their independence and empower them to make informed
decisions. For people with any chronic disease, accurate
and readily understandable information helps support their
independence and gives them some control over their own
health pathway. Access to relevant information, both at the
time of diagnosis and throughout the course of the disease,
provided in an appropriate way, could significantly improve
the quality of life of people with MS.
◆ The quality of communication at the time of diagnosing a
chronic disease influences patient health outcomes. This is
particularly the case for MS, which is not only unpredict-
able but also plays out over a long period, often many
years. Uncertainty over the cause, course and control of
MS means there is a constant high level of demand for
information relating to the disease.
◆ This demand has been responded to by specific MS groups
or organizations, and, to a lesser extent, by public health
authorities and pharmaceutical companies. Information is
still predominantly provided in printed publications, but
the growth of the Internet is providing a powerful means
of providing and sharing information. Although it has
improved greatly, there is considerable scope for further
improving provision of information to people with MS and
there is still a long way to go before all needs are satisfied.
There are a variety of barriers to obtaining information
and, in many cases, the gap between the information
required and that received is vast.

ng nt
v idi ns) ff ere d
pr o ea di te
in prin S
r ies nt m e s M
t
un er e 70% tri ing th
co diff o un vid e wi
f f c pro pl
e o (by MS e o ups peo
86.4% 94.7%
n tag tion ith t a g
r o t o
rce a ew n g on 65.5%
Pe form opl
53.7% rce e i
n e 0 Pe com mat
5.1 i p 53.6% in for 0
to =11 5.2 in 11 70%
N
49.1% N=

14.3%

w
l Lo
ia le
a ter idd
dM ine rm dd
le
lpl we i
nte eh
e
sit
e Lo rm gh
Pri n eb pe Hi
ph
o W er Up orl
d
le sl ett W
Te w
Ne

25
5 I N F O R M AT ION FOR THE PEOPLE WITH MS

Relevant quality of life principles

◆ 1.5. People with MS must be empowered to take control ◆ 4.1. People with MS must be offered good quality infor-
of the decisions affecting their lives and to self-manage mation as well as training for a wide range of health
the disease as much as possible. To encourage the highest promotion practices, depending on patient preferences
possible degree of self-management, they should be able and their effectiveness in enhancing quality of life for the
to gain access to a broad range of information, advice individual.
and education regarding the nature of MS, its treat-
ment, and methods for improving quality of life. Access
to this information is to be provided through multiple
sources, including books, pamphlets, websites, and health
and social service professionals. Mutual or peer support
opportunities should also be available to people with MS.

s
Ye o
N n
tio
o rma
inf
No
d
nte l
f pri eria
yo at
b ilit ion m
a at
ail
Av form S
5.3 in r M 0
fo 11
N=

26

Limitations
◆ Questions on the services provided to people with MS were
only answered by between 50 and 62 countries, the major-
ity of which are economically advanced. Consequently the
findings are less global than those reported elsewhere in
the Atlas of MS and probably paint an over positive picture.
Salient Findings
Advocacy and campaigning
◆ In 32% of the countries that responded, advice to gov-
ernments about MS matters is not provided whereas in
55% of countries the government is advised by the MS
organization, in 34% by health professionals in the public
sector and in 3% by the pharmaceutical/biotech industry.
◆ In 32% of the countries that responded, there is no lob-
bying or campaigning to improve the rights, entitlements
and quality of life of people with MS whereas in 65%
of countries that responded, the MS organization lob-
bies and campaigns on these issues; in 23% of countries,
these activities are also undertaken by health profession-
als in the public sector and in 16% also by industry.
Personal support
◆ In 37% of countries that responded, employment advice
for people with MS is not provided, whereas it is provided
by the MS organization in 57%, by health professionals in
the public sector in 24% and by industry in 3% of coun-
tries.
◆ In 29% of the countries that responded, general legal
advice for people with MS is not provided, whereas in
67% of countries that responded it is provided by the MS
organization, in 21% by health professionals in the public
sector and in 8% by industry.
◆ In 24% of the countries that responded, education advice
for people with MS is not provided, whereas in 67% of
countries that responded it is provided by the MS organi-
zation, in 32% by health professionals in the public sector
and in 11% by industry.
◆ In 24% of countries that responded, courses for people
with MS are not provided, whereas they are provided by
the MS organization in 71% of countries, by health profes-
sionals in the public sector in 30% and by industry in 21%.
◆ In 21% of the countries that responded, there are no
home visits to people with MS, whereas in 68% of
countries that responded training is provided by the MS
organization, in 30% by health professionals in the public
sector and in 13% by industry.
SUPPORT AND SERVI C E S 6
◆ Support and services on various issues could be provided
by more than one group such as MS organizations, health
professionals or pharmaceutical industry.
Education and training
◆ In 8% of the countries that responded, educational meet-
ings, seminars and conferences are not organized where-
as in 83% of countries that responded they are provided
by the MS organization, in 54% by health professionals in
the public sector and in 46% by industry.
◆ In 17% of the countries that responded, specific training
for health professionals in MS is not available, whereas
in 41% of countries that responded training is provided
by the MS organization, in 70% by health professionals in
the public sector and in 40% by industry.
◆ In 22% of the countries that responded, self help and
mutual support groups are not organized for people with
MS, whereas in 76% of countries that responded training
is provided by the MS organization, in 8% by health pro-
fessionals in the public sector and in 3% by industry.
◆ In 30% of the countries that responded, adaptations, liv-
ing aids or technical support are not provided for people
with MS, whereas in 51% of countries that responded
they are provided by the MS organization, in 33% by
health professionals in the public sector and in 2% by
industry.
◆ In 45% of the countries that responded, transport is
not provided for people with MS, whereas in 48% of
countries that responded transport is provided by the MS
organization, in 7% by health professionals in the public
sector and in 2% by industry.
27
6 S U P P O RT AND SERVICES
Family and carers
◆ In 11% of the countries that responded, information for
family and carers is not provided, whereas in 79% of
countries that responded it is provided by the MS organi-
zation, in 33% by health professionals in the public sector
and in 21% by industry.
◆ In 61% of the countries that responded, respite care for
family and carers is not provided, whereas in 24% of coun-
tries that responded it is provided by the MS organization
Implications
Advocacy and campaigning
◆ In those countries where no patient group or organization
is advising, lobbying and campaigning government, the
needs of people with MS will not inform decisions.
Education and training
◆ The early-stage symptoms are easily confused with those
of other diseases. It is a matter of concern therefore that
in about one in six countries, health care professionals are
not receiving any training to help them identify and treat
people with MS.
◆ Health and social care professionals should provide peo-
ple with MS with the knowledge, skills and confidence
to participate actively in all aspects of their own care and
encourage and support them to become expert patients.
◆ There is a specific lack of public and professional aware-
ness of the dimension of MS in the domains of epidemi-
ology and impact of disease on individuals, carers and
society, including impact on individual loss of independ-
ence, and cost of long-term care. In particular, the chronic
progressive nature of MS must be better conveyed to all.
28
and in 19% by health professionals in the public sector.
No respite care is provided by industry.
◆ In 65% of the countries that responded, financial or work
benefits for family and carers are not provided, whereas
in 21% of countries that responded they are provided by
the MS organization, in 14% by health professionals in
the public sector and in 2% by industry.
Personal support
◆ MS is a disease that can easily lead to feelings of isolation.
Typically at some point it leads to significant physical dis-
ability and also often forces people to leave paid employ-
ment. In this context aids and adaptations can transform
the lives of people with MS and extend their period of
independence. Our survey found that in three out of
every ten countries no aids or adaptations are available
from any source.
◆ Without adequate education, advice and support people
with MS are unaware of how best to cope with their MS
and remain in education or employment. The greatest
economic impact of MS is the loss of income resulting from
the person with MS (and their carer) leaving employment.
◆ There is evidence that people with long-term conditions
such as MS value participation in mutual support groups,
which despite being cheap and easy to organize are not
available in 22% of the countries that responded.
◆ Mobility for people with MS can be greatly enhanced
when they continue to drive or when alternative trans-
port is available. People with MS may have difficulty with
using transport because of their functional disabilities,
cognitive impairment and use of mobility aids, yet public
transport, often their only possible option, is sometimes
not available or is difficult to use. In the 45% of countries
we surveyed where no transport support is available,
people with MS remain isolated inside their homes, with
inhibited ability to participate in life in the community and
limited access to the best services and support.
 SUPPORT AND SERVI C E S 6

Family and carers

◆ MS is a disease that impacts on the whole family. The employment policies and to break the link between the
well-documented high emotional and physical burden onset of MS and the subsequent social and economic dis-
of MS, which rises as the disease progresses, is borne advantage that so often occurs. The unpaid care provided
by the family who provide emotional support, help with by family and friends must be officially recognized and
daily tasks, chores and intimate help. Many family mem- carers need to be valued and supported in the enormous
bers adjust very well to the caring role; however there is role they play in the care of people with MS.
evidence that caring can have a detrimental impact on a
◆ These findings highlight the key role played by MS organi-
carer’s psychological well-being. One of the biggest con-
zations in supporting, representing, advising and supporting
flicts that carers face is the need to work in order to meet
people with MS and acknowledging and addressing the
essential family needs. Studies have shown that caregiv-
special needs of caregivers. Most MS-related services are
ers perceive levels of social support to be low and value
provided to the person with MS by family members and
respite facilities. It is important that there is support for
other informal carers, who are themselves profoundly
family members, of which respite care is the most impor-
affected by having a relative or friend with MS. These
tant type. Our finding that no such provision exists in
family members and friends benefit from services designed
six out of ten countries surveyed is of grave concern and
to help them cope with the stress and other impacts of
should lead to a review of this situation. The poor provi-
the disease. Children can be affected by having a parent
sion of respite could contribute to a high societal cost of
with MS and may not fully understand the reasons for a
MS, as family members and carers experience frustration,
parent’s health problems, and think they have somehow
exhaustion and burn out. (See MSIF, Caregiving in MS,
caused them or feel neglected as a member of the family.
MS in focus, issue 9, January 2007.)
◆A better understanding of the socioeconomic costs of
MS to individuals, families, carers and the community is
needed to continue to challenge health, welfare and

Relevant quality of life principles

◆ 1.1. People with MS must be able to realize their full
potential. They should have the opportunity to travel to
places outside the home, work at jobs, acquire an educa-
tion, and do the other things that people without disabili-
ties do. They should have the opportunity to participate
in community life as much as is possible and desired.
◆ 3.1.People with MS must have access to a wide range
of home, community-based and respite care services that
help individuals to remain in their own homes for as long
as possible.
◆ 3.2. Institutional or residential services, such as nursing
homes, should be used only if home and community-
based care is no longer appropriate. Services in these
institutional facilities must be designed to take account of
the interests and needs of people with MS, who are typi-
cally younger than other residents.
◆ 3.3. Paid professional continuing care providers must
receive adequate training in the specific features of MS,
and adequate pay, fringe benefits, and supervision.
◆ 5.1. Services and training must be available to family
members and other informal carers affected by MS as
well as to the person with MS. They must also be provid-
ed with information about available community services
that may provide support.
◆ 5.2.Respite care must be available to relieve the burden
on family members and other informal carers. It should
be available either in the home or in institutions providing
continuing care.
◆ 5.3. Family members and other informal caregivers must be
routinely evaluated to assess their physical and emotional
stress and other personal needs related to caregiving.
◆ 5.4. People with MS and their families must have access
to family and relationship counselling.
◆ 5.5. Services must be available to people with MS to aid
them in fulfilling their parenting responsibilities. Children
are to be protected from having to take on inappropriate
roles as caregivers for parents with MS.
◆ 5.6. Services must be available to prevent physical, finan-
cial and psychological abuse of people with MS by family
members and other informal caregivers.
◆ 6.1. Services should be available to enable people with
MS to continue to drive their own cars for as long as pos-
sible, if desired.
◆ 6.2. For people with MS who cannot or do not drive, acces-
sible transport services must be available and affordable.

29
7 D R U G T R E ATMENTS
AND ALTERNATIVE AND COMPLEMENTARY THERAPIES

Limitations
◆ Questions on the symptoms and recently licensed treat- ◆A limitation of all data relating to “availability” of a
ments of MS were only answered, in most cases, by resource is that whether or not a resource is available in a
approximately 78 countries, the majority of which are country has no bearing on access to that resource.
high income countries. Consequently the findings are less
global than they are elsewhere in this Atlas of MS and
probably paint an overly positive picture.

Salient Findings
◆ The most common presenting symptom of MS is motor ◆ The median percentage of the cost of disease-modifying
weakness, dysfunction or spasticity, seen in 50% of treatments paid by government is 80%, by insurance
patients in the countries that responded, followed by 31.6% and by the individual 0%. However, the range for
sensory problems and fatigue (40%), visual disturbances all three sources of financing is 0–100%. In some coun-
(31%), disturbed balance (22%), bladder and bowel tries the individual is expected to pay the total cost of
problems (17.5%), pain (15%), cognitive or behavioural disease-modifying treatments, whereas in others the total
problems and sexual dysfunction (10%) (Figure 7.1). cost is covered by the government.
◆ Drugs to treat the MS symptom of pain are available in ◆ The most common steroid used for treating exacerba-
96% of the countries that responded, whereas drugs are tions and relapses in 94.1% of countries that responded
available to treat urinary, bladder and bowel problems in is methylprednisolone, whereas prednisolone is available
89.9% of countries, sensory disturbances in 85%, fatigue in 73% of countries and dexamethasone in 44.6%.
in 82.7%, sexual dysfunction in 81.8%, motor weakness,
◆ Thefive most prevalent alternative or complementary
dysfunction or spasticity in 77%, cognitive or behavioural
approaches used in more than 50% of the countries that
symptoms in 72.9%, visual weakness in 56.6% and bal-
responded are diet and nutrition (88.3%), acupuncture
ance in 52.5% of countries (Figure 7.2).
(86.7%), herbal medicine (81.7%), massage (78.3%) and
◆ The disease-modifying treatment, interferon beta-1b, is homeopathy (73.3%).
available in 74.5% of countries that responded, whereas
◆ Other alternative or complementary approaches used
interferon beta-1a (subcutaneous) is available in 68.9%
in some of the countries that responded include chiro-
of countries, mitoxantrone in 68.6%, interferon beta-1a
practics and osteopathy (41.7%), aromatherapy (40%),
(intramuscular) in 64.2% and glatiramer acetate in 45.3%
hyperbaric oxygen (40%), cannabis (38.3%), Ayurvedic
(Figure 7.3).
medicine (36.7%), Pilates (36.7%), dentistry (replace-
◆ The median percentage of people with MS eligible to ment of fillings)(36.7%), biofeedback (35%), macro-
receive disease-modifying treatment that do receive it in biotics (31.7%), naturopathy (28.3%), hypnotherapy
all countries that responded is 50%. The median percent- (21.7%), hypnosis (18.3%) and iridology (18.3%).
age of people receiving disease-modifying treatment in
high income countries is 75%, in upper middle income
countries 40%, in lower middle income countries 34%
and in low income countries10% (Figure 7.4).
◆ Patient choice and funding policy (61.1% and 57.7%,
respectively) were given by countries that responded as
the main reasons why less than 100% of eligible people
with MS do not receive disease-modifying treatment,
whereas general clinical practice and access to a neurolo-
gist were less likely reasons why people with MS do not
receive disease-modifying treatment (29.6% and 27.8%,
respectively) (Figure 7.5).

30
 DRUG TREAME N T S 7
AND ALTERNATIVE AND COMPLEMENTARY THERAPIES

74.5%

68.9%
68.6%

64.2%

se
i s ea
d 45.3%
th le
s wi ilab
e a
tri av
o un nts
f c me S
g e o treat h M
t a it
c en ying le w -1
b
r
Pe odi eop f eta )
b us
50% m p ron neo
7.3 r
fo =106 rfe
uta ne
nte I bc tro
n )
N (su xa lar
-1a M
ito u scu te
ta am eta
40% n be ntr ac
o ( i e r
er a
40% erf -1 ram
Int beta l ati
G
ron
te rfe
s In
p tom 31%
ym le
o f s eop
e p
n tag d by 22%
rce nte
Pe rese MS
7.1 p ith 17.5%
w =88
N ity
ic 15%
ast ms
r sp l e
o b
on pro ue
cti ry a tig 10%
un s o F es
dysf S en a nc 10%
urb e
ss/ ist lan
c
kne l d B a el
ea ua w
rw Vis bo in
oto a nd Pa
M er s 77%
d d lem
Bla pr o b n 85%
tio
u ral f u nc 82.7%
vio ys
ha ld 56.6%
/ be x ua
e Se 52.5%
itiv
o gn 89.9%
C
96%

s 72.9%
d rug S 81.8%
th fM
s wi s o
e to m
tri
o un ymp
fc t s y
icit
e o trea ast
a g o sp ms
e nt le t or o ble e
rc b tio
n p r gu
Pe vaila unc s o ry F ati es
a =8 8 f n nc
7.2 ys Se a
N /d
ss r b
u ce
ne ist lan
ak al
d Ba el
rw
e u ow
Vis db in
oto r an Pa
M s
de lem
lad b
B pro on
ra l cti
un
iou ysf
av al
d
b eh xu
e/ Se
itiv
gn
Co

31
7 D R U G T R E ATMENTS
AND ALTERNATIVE AND COMPLEMENTARY THERAPIES
Implications
Presenting symptoms –
symptomatic treatments
◆ Our understanding of symptomatic pain has been improv-
ing. Until the mid-1980s MS was widely considered to be
a painless condition. It is now widely recognized that MS
can cause pain and that at least one third of all people
with MS will feel some level of pain at some time. (See
MSIF, Pain and MS, MS in focus, issue 10, July 2007)
◆ MS can affect a person’s emotions as well as his or her
body. Although this has been recognized since MS was
first described in the 19th century, it is only more recently
that we have begun to understand more about the
emotional and behavioural symptoms of MS, which can
include depression. These symptoms are sometimes over-
looked, not fully acknowledged, or even dismissed as an
understandable emotional reaction to the condition.
◆ Less well understood by both neurologists and the pub-
lic at large, is fatigue associated with MS. In general,
researchers are increasing their efforts to understand
fatigue, as the majority of people with MS will experience
this invisible but severe and disabling symptom at some
point during the course of their disease. Fatigue impacts
on a person's health-related quality of life and ability to
work. Health care professionals need to include assess-
ments of fatigue in their routine care of patients with
MS and should be able to offer strategies to help them
deal with any fatigue they might experience. (See MSIF,
Fatigue, MS in focus, issue 1, February 2003)
◆ The use of symptomatic treatments is widespread, but the
fact that the most common presenting systems are motor
weaknesses underlines the need for better understanding
of how transport and drug delivery options will overlap
with care and treatment possibilities.
32
Availability, cost, reimbursement for
disease-modifying treatment
◆ The data highlight the significant income inequalities that
exist around provision of, and those who are likely to
benefit from disease-modifying treatments.
Relapse treatments
◆ The most common treatments are based on steroids with
powerful anti-inflammatory properties. Steroids are rela-
tively inexpensive (particularly compared to most disease-
modifying treatment) and the country-by-country income
gradient associated with their use is relatively shallow.
Complementary treatments
◆ MS is a chronic condition for which there is no cure and
only limited symptomatic treatments. Furthermore, the
costs of treatments that have been associated with some
reduction in relapse rates (typically the interferons) tend
to be high irrespective of who is funding the drugs. In this
environment, people with MS tend to actively seek reme-
dies or treatments that will ameliorate the impact of their
symptoms and often these are approaches that would be
classed as “complementary” or “alternative”.
◆ There is a wide range of complementary (and alternative)
therapies being used by people with MS. Typically, there
is little if any evidence to support their use (few if any
have been properly scientifically tested).
◆ Finding some way to do rigorous blinded testing of such
treatments would be of considerable benefit to people
affected by MS.
See MSIF, MS: The guide to treatment and management,
2006, Demos
 DRUG TREAME N T S 7
AND ALTERNATIVE AND COMPLEMENTARY THERAPIES

Relevant quality of life principles

◆ 2.1.1.All people with MS must have access to evidence- ◆ 2.4.1. Medically-effective and culturally-appropriate
based, quality health care. treatments must be available to address the symptoms
of MS, including (but not limited to) fatigue, depression,
◆ 2.1.2. Health care for people with MS includes medi-
cognitive impairment, impaired sexual function, pain,
cally-effective treatments, including symptom and disease
bladder and bowel dysfunction, limited mobility, vision
modifying drugs, rehabilitation services, appropriate and
problems, and others. Health professionals must consider
affordable enabling technology that is tailored to the
in a systematic way whether a person with MS has addi-
needs of people with MS, and continuing care services.
tional, sometimes “hidden” symptoms or problems that
People with MS have access to medical care, treatments
can affect QOL.
and therapies appropriate to their needs.

75%

se
i s ea ome
d nc 40%
ng t i
e ivi eren 34%
50%
rec iff
p le in d
o t
pe en 10%
e of atm ries
g t r e n t
nta ng cou
rce yi f
Pe odif ps o
m u w
7.4 gro =106 Lo
le
N idd
rm le
we idd
Lo er
m gh
p Hi
Up orl
d
W

%
1 00 ot nt
n n e
s tha S do reatm 61.1%
l es h M g t 57.7%
y i t i n
s wh le w dify 29.6%
n p o e
a so peo se m h oic 27.8%
r e le ea c y
ain ligib dis ie nt o lic
t p e
M f e ive Pa ing tic
7.5 o ce nd rac t
r e 5 4 F u l p gis
N= ica rol
o
clin eu
ral a n
ne to
Ge ss
ce
Ac

33
8 H U M A N R E SOURCES
Limitations
◆A limitation of all data relating to the “availability” of a
resource is that whether or not a resource is available in a
country has no bearing on access to that resource.
Salient Findings
◆ Globally,the median estimated number of neurologists is
1.01 per 100 000 of the population (with an interquartile
range of 0.25–3.95).
◆ Globally, the median estimated number of MS neurolo-
gists is 0.04 per 100 000 (with an interquartile range of
0–0.19) (Figure 8.1).
◆ Regionally,
the median estimated number of MS neurolo-
gists per 100 000 is greatest in Europe (0.19) followed
by the Americas (0.03) the Western Pacific (0.01) and the
Eastern Mediterranean (0.004). The median estimated
number of MS neurologists per 100 000 in South-East
Asia and Africa is zero.
◆ By
income category, the median estimated number of MS
neurologists per 100 000 is greatest in high income coun-
tries (0.21 per 100 000), followed by upper middle (0.07)
and lower middle income countries (0.02). The median
estimated number of MS neurologists per 100 000 in low
income countries is zero.
◆ Globally,the median estimated number of MS nurses
per 100 000 is 0 (with an interquartile range of 0–0.07),
although 44.2% of the countries that responded sug-
gested that MS nurses exist in their country (Figure 8.2).
◆ Regionally, there are MS nurses in 75% of the coun-
tries that responded in Europe, followed by South-East
Asia (50%), the Americas (44.4%), the Western Pacific
(44.4%) and the Eastern Mediterranean (14.3%). None of
the 18 countries that responded in Africa has MS nurses.
◆ Regionally, the median estimated number of MS nurses
per 100 000 is greatest in Europe (0.07) followed by
South-East Asia (0.0004). The median estimated number
of MS nurses per 100 000 in the Americas, the Western
Pacific, the Eastern Mediterranean and Africa is zero.
◆ Regionally,
patients with MS are seen by an MS nurse in
79.4% of the countries that responded in Europe followed
Implications
MS neurologists
◆ Without neurologists MS cannot be diagnosed or treat-
ments implemented. The Atlas of MS highlights where
resources are currently lacking
34
by the Americas (72.7%), the Western Pacific (33.3%),
the Eastern Mediterranean (14.3%) and Africa (5.9%). No
people with MS (0%) in any of the countries in South-East
Asia that responded are seen by an MS nurse.
◆ MS nurses exist in 80.1% of the high income countries
that responded, 55% of the upper middle income coun-
tries, 18.5% of the lower middle income countries and
4.8% low income countries.
◆ By income category, the median estimated number of MS
nurses per 100 000 in high income countries is 0.12 per
100 000. The median estimated number of MS nurses per
100 000 in upper middle, lower middle and low income
countries is zero.
◆ By income category people with MS are seen by an MS
nurse in 87.5% of high income countries followed by
upper middle (62.5%) and lower middle (15%). No peo-
ple with MS (0%) are seen by an MS nurse in any of the
low income countries that responded.
◆ In 82.4% of the countries that have MS nurses there is
MS-specific education or training, whereas MS nurses can
undertake the international accredited MS nursing exam
in only 20.6% of countries.
◆ Globally,patients with MS are seen by a physiotherapist
in 92.1% of the countries that responded, followed by a
psychologist or psychiatrist (78.4%), urologist (76.1%),
occupational therapist (61.4%), social worker (56.8%),
gynaecologist (56.8%), speech therapist (53.4%) and MS
nurse (46.6%).
◆ Globally, hospital-based interdisciplinary teams are avail-
able in 73.3% of the countries that responded whereas
community based interdisciplinary teams are available in
32.8% of the countries that responded.
MS nurses
◆ An MS nurse plays a vital role as an educator, care pro-
vider, and advocate for patients and families affected by
MS and MS nurses are emerging as a leading force in
providing care to people with MS. While there is currently
little evidence of effectiveness for the MS nurse specialist
role, there is evidence for its appropriateness, although
more rigorous primary research is required to test this.
 HUMAN RESOUR C E S 8

.05
< 0 0.1
5- 0.3
MS 0.0 .11- .99
r of ts 0 1-
0 >1
e is 0.3 n
mb log 000 ma
tio
Nu euro 00, ion or
8.1 n er 1 lat inf
p opu 4 No
p =10
N

.03
< 0 0.1
3- .29
0.0 1-0 0.5
0. 1 1- 0.5
0.3 > ion
at
rm
i nfo
No
es n
n urs latio
S u
M op
r of 0 p
e 00
mb 0,
Nu er 10 4
8.2 p =10
N

35
8 H U M A N R E SOURCES

Implications
Other health professionals
◆ The delivery of care for people with long-term diseases is reported in just under one third of countries. The inter-
becoming increasingly “patient centred”, and a culture of disciplinary approach brings together professionals with a
treatment by interdisciplinary teams is emerging. There is range of relevant skills who have the ability to contribute
relatively widespread evidence (see references from the to a group effort on behalf of the patient, resulting in a
MSIF’s Principles to Promote the Quality of Life of People synergistic treatment programme producing more effec-
with Multiple Sclerosis (available at www.msif.org)) that tive care than each discipline could achieve individually.
the best approach to treating people with MS is through
◆ The interdisciplinary approach typically makes it easier for
interdisciplinary teams. Within this model, the aim is to
people with MS to gain access to disease-modifying treat-
offer patients a seamless service, which typically involves
ments and therapies, and is to be encouraged. Our survey
bringing together various health professionals including
has found a wide range of waiting times before people
doctors, nurses, physiotherapists, occupational therapists,
with MS can see an interdisciplinary team, and it should
speech and language therapists, clinical psychologists
be a priority to reduce this wait where possible.
and social workers. Other professionals with expertise in
treating neurologically disabled people cover dietetics, ◆ The findings suggest that globally MS is being managed
continence advisory and management services, pain man- in a medical model of care that relies on hospital infra-
agement, chiropody, podiatry and ophthalmology services. structures to deliver hence delays at diagnosis and a lack
of support in community care, transport and respite care.
◆ Hospital-based interdisciplinary teams were reported
to exist in nearly three quarters of the countries that
responded, whereas community-based teams were

Relevant quality of life principles

◆ 2.3.1. Medical care is to be provided by clinicians who and speech therapy, counselling, and other services. The
have expertise in MS, including neurologists. In order to purpose and potential benefits of those services are to be
ensure prompt and expert treatment of the wide range of clearly explained to them.
symptoms and disabilities that people with MS may expe-
◆ 2.3.6. All neurologists, primary care physicians, nurses,
rience, both care and case management must be provided
and other health professionals who work with people
by multidisciplinary teams that specialize in MS.
with MS must have the goal of promoting QOL, and not
◆ 2.3.2. As appropriate, people with MS must be offered a just clinical management of the disease.
broad range of services beyond those provided by physi-
cians and nurses, including physical, occupational, and

36
 HUMAN RESOUR C E S 8

0 0.19
0.004
0
0.03
0
es
n urs orld 0
S ew
M
a nd nd th
ts a
gis ions
a
ric 0.07
l o
eg Af
ro
eu O r
S n WH ric
as
f M in Am
e 0
e r o 00
0
mb 0,
n 0.0004
ea
Nu er 10 4 es rran 0.01
p =1 0 urs ite
8.3 n ed e 0
N S
M n M rop
s ter Eu 0.04
Ea ia
As
st
Ea
uth ic 0.01
So acif
nP
es ter d
W orl
W

es
tri
e s oun 0
urs f c
S n ps o 0.07 0.21
n d M grou 0
sa e
g ist com 0.02
l o t i n 0
r o
eu ren
S n diffe
0
f M i n
ro 0 0.12
m be 0,00
w
Nu er 10 4 Lo
p 1 0
8.4 N =
el
dd
r mi
we 0.04
Lo dd
le
i
es rm
urs pe
Sn Up gh 0.01
M Hi
d
orl
W

37
9 DISABILITY ENTITLEMENTS, LEGISLATION AND INSURANCE

Limitations
◆ Questions on the availability of disability entitlements mies. Consequently the findings are less global than they
were only answered by between 50 and 70 countries, are elsewhere in this Atlas of MS and probably paint an
the majority of which are economically advanced econo- over positive picture.

Salient Findings
◆ The most common disability entitlement for people with ◆ By income band, financial support in the form of tax ben-
MS is financial or monetary compensation (including efits was reported to be available in 75% of high income
pension and allowances) available in 68.6% of countries countries, 70% of upper middle income countries, 29.6%
that responded, followed by rehabilitation and health- of lower middle income countries and none (0%) of the
related benefits (67.7%), benefits in the workplace low income countries.
(52%), tax benefits (51%) and benefits in the home
◆ Regionally, tax benefits or relief were reported to be
(48%) (Figure 9.2).
available in 72.5% of the European countries that
◆ Regionally,financial or monetary compensation (including responded, followed by 50% of those in the Eastern
pension and allowances) is available to people with MS in Mediterranean and South East Asia, 44.4% of those in
90% of countries in Europe that responded, followed by the Americas, 33.3% of those in the Western Pacific and
77.8% of those in the Western Pacific, 72.2% of those in 12.5% of the African countries that responded.
the Americas, 64.3% of those in the Eastern Mediterra-
◆ Tax benefits or relief are available in 75% of the upper
nean, 25% of those in South East Asia and 18.8% of the
middle income countries that responded, 69.4% of the
African countries that responded (Figure 9.1).
high income countries, 37% of the lower middle income
◆ Financialor monetary compensation (including pension countries and 10.5% of the low income countries.
and allowances) is available to people with MS in 90%
◆ Regionally, workplace benefits for people with MS are
of the upper middle income countries that responded,
available in 67.5% of European countries that responded,
88.9% of high income countries, 55.6% of lower middle
followed by 57.1% of those in the Eastern Mediterra-
income countries and 26.3% of the low income countries.
nean, 50% of those in the Americas, 33.3% of those in
◆ Regionally,rehabilitation and health benefits are avail- the Western Pacific, 31.3% of African countries and 25%
able to people with MS in 85% of the countries in Europe of South East Asian countries (Figure 9.3).
that responded, followed by 78.6% of those in the
◆ Workplace benefits for people with MS are available in
Eastern Mediterranean, 77.8% of those in the Western
69.4% of the high income countries, 60% of the upper
Pacific, 66.7% of those in the Americas, 50% of those in
middle income countries, 44.4% of the lower middle
South East Asia and 12.5% of the African countries that
income countries and 21.1% of the low income countries
responded.
(Figure 9.4).
◆ Rehabilitationand health benefits are available to people
with MS in 94.4% of high income countries, 85% of
upper middle income countries, 59.3% of lower middle
income countries and 10.5% of the low income countries.
◆ Regionally,benefits in the home (e.g. for adaptations) for
people with MS were reported to be available in 75% of
European countries followed by 44.4% of countries in the
Americas and the Western Pacific, 35.7% of those in the
Eastern Mediterranean, 25% of those in South East Asian
and 6.3% of African countries.

38
 DISABILITY ENTITLEMENTS, LEGISLATION AND INSURANCE 9

Implications
◆ Recent research in the UK has shown that most people ◆ Many people with MS who leave the labour force are
with MS are in employment at the time of diagnosis, but dependent on disability entitlements and means-tested
that employment loss starts shortly after diagnosis and cash assistance for their income. Thus, the eligibility cri-
80% of people with MS are unemployed within ten years teria, payment levels and administration of these entitle-
of diagnosis. Although they focus on one country, these ments have a direct impact on the quality of life of people
findings illustrate the need to develop vocational rehabili- with MS. Eligibility criteria and application procedures
tation programmes that enable people with MS to gain for public and private disability entitlements and means-
access to, maintain or return to employment, or other tested cash assistance must be fair and not unduly bur-
useful occupation densome nor restrictive. Cash payments for public and
private disability benefits and means-tested cash assist-
◆ Many people with MS leave the labour force because of
ance must be high enough to allow people with MS to
the symptoms of the disease, such as fatigue, functional
have an adequate standard of living.
disability and cognitive impairment. Leaving the workforce
can have a major effect on family income as well as on an ◆ Disability entitlements and services must be flexible,
individual’s self esteem. Some people with MS could con- allowing for partial disability, to enable people with MS to
tinue to work if employers were to provide assistance and take time off when needed or to continue working part-
restructure their work. A wide range of accommodations time, if desired. They must provide an adequate standard
or adaptations are possible, including part-time work, addi- of living, and have the flexibility to allow for the disease
tional breaks in the work day, working only in the morn- variability that is characteristic of MS.
ings, reducing the room temperature, changing work tasks,
telecommuting, reducing travel, providing ramps and pro-
viding offices near restrooms, among others. Governments
and social service providers can contribute by providing
vocational rehabilitation and training programmes.
◆ The need to integrate health and employment teams to
improve vocational rehabilitation is now well recognized.
Services offered should include provision of mechanisms
for people with MS to make adjustments in their careers
and to continue working for as long as they wish to. Early
intervention is vital to support and train people to enable
them to obtain, maintain, and advance in jobs that are
compatible with their interests, abilities and experience.
Poor support for employment and inadequate financial
advice has the potential to add to the global economic 68.6%
67.7%
cost of MS.

t 52%
m en s
tl e ion 51%
e nti reg
ity HO 48%
a bil n W
di s Si
m on th M
i
om le w rld
tc
os peop e wo
M r
9.2 fo nd th 2 ati
on
a =10 ns ts
N p e
m efi n
co be ce
ry ate
d pla
eta rel ork fits
on t h ew e ne
ial
/ m
e al th
x b me
nc dh t s in Ta e ho
a n fi h
Fin na ne in
t
tio Be fits
i l ita n e
b Be
ha
Re

39
9 DISABILITY ENTITLEMENTS, LEGISLATION AND INSURANCE

Relevant quality of life principles

◆ 1.4. People with MS should have access to treatments, ◆ 7.4. Vocational rehabilitation and training services must
programmes, and services without regard to their ability be available to help people with MS return or stay in the
to pay. labour force, if desired.
◆ 1.6. Legislation must be enacted that protects the rights ◆ 7.5. When people with MS do retire from paid employ-

of people with MS and other people with disabilities ment, they must be provided counselling 68.6% and encourage-
against discrimination in all aspects of social and commu- ment to develop alternative, voluntary67.7% activities that can
nity life. Enforcement of these laws is to be consistent and fill the void often left by the loss of work. The transition
effective. Among other things, these laws require govern- out of paid employment is to be planned well in advance
t 52%
ments, employers, building owners, transportation organ- to ensure people ewith m en MS s receive all of the services to
l o n 51%
tit regi to prepare for alternate occu-
izations, and others to make reasonable adjustments to which they are
y en entitled,
O 48%
improve accessibility for people with disabilities. These pationsabor ilitactivities,
W
H and to avoid the stress that may
n
laws are to ensure that people with MS have access to all dis S i
accompany
m on th M abrupt, unplanned transitions from work to
types of financial instruments, including current accounts wi
om retirement.
s t c ople orld
and savings accounts, credit cards, insurance, loans, andMo pe e w
for nd 8.1. Eligibility criteria and application procedures for pub-
◆ th
ion
all forms of financial assistance. 9.2 a lic 1
2
0and n sat t s
private disability e entitlements ef i and means-tested
N= mp en e
◆ 7.1. Services must be available to allow people with MS cash assistance must c o b c
y be fair d and not pla unduly burdensome
tar ate ork fits
to continue employment as long as they are productive nor restrictive. o ne h rel w n e
ial
/m ea
lt the xb
e me
and desire to work. nc dh t s in Ta e ho
◆ 8.2. Cash a payment n levels i
ne for public and t private disability
f h
Fin na in
tio Be fits
◆ 7.2. Employers must provide job modifications and other benefitsiland ita means-tested cash assistance n e must be high
b Be
ha for people with MS to have
adaptations or accommodations to enable people with Re
enough an adequate stand-
MS to continue working. Employers must be educated ard of living.
about the nature and symptoms of MS, and how job
◆ 8.3. Disability entitlements must be flexible, allowing for
modifications can often enable people with MS to remain
partial disability, to enable people with MS to take time
productive employees for many years.
off when needed or to continue working part-time, if
◆ 7.3. Employers should provide time off for family mem- desired.
bers and other informal care-givers to accommodate the
unexpected needs of people with MS. Employers should
be educated about the roles of family members in treating
and managing acute exacerbations and symptoms of MS.
S
M
i th
w
le
e op orld
p
or e w
i t s f d th
f
ne an 52%
e be ions
a c g
pl O re
ork
W WH 2
9.3 in =10
N 31.3% d
50% orl
W
57.1%
a
ric
Af as
67.5%
eric 25%
Am n
n ea 33.3%
rra e
d ite u rop
e E ia
M As
s t ern E a st ific
Ea th- P ac
u
So ern
est
W

No

40
 DISABILITY ENTITLEMENTS, LEGISLATION AND INSURANCE 9

s
Ye o
N n
o
mati
o r
inf
No

y
tar S
o ne h M
/m it
c ial ple w
n o
ina e
o f f for p
y n
ilit io
i l ab nsat
a e
Av omp 2
9.1 c 10 69.4%
N= 60%
44.4%

21.1% 52%

S
M
i th tries
w un
le
eop of co
p s Lo
w
s for oup le
t r idd
n efi e g m le
e m er dd
c e b inco L ow r mi gh
pla ent Up
pe Hi
ork iffer orl
d
W d 2 W
9.4 in =10
N

41
10 M A J O R I S S UES

Salient Findings
◆ The major issue for people living with MS, experienced ◆ The major changes to improve MS care desired by the
in 40% of the countries that responded, was the lack of country contributors include informing and educating
social support followed by the lack of information for and health professionals about MS, suggested by 43.2% of
education of the public about MS (37.9%), the lack of the countries that responded, informing and educating
accessibility to and availability of disease-modifying treat- the public about MS (38.9%), making health services,
ments (35.8%), issues related to employment (30.5%) including MS centres, available (35.8%), making rehabili-
and health insurance and social security related issues tation facilities, including physiotherapy, accessible and
(27.4%) (Figure 10.1). available (33.7%), developing MS societies and support
groups (27.4%) and improving and expanding research
◆ The major issues for health professionals involved in MS
into MS issues (26.3%).
care include the lack of information for and education of
health professionals about MS, experienced in 48.4% of
the countries that responded, issues related to the time it
takes to diagnose MS (i.e. the process/technology required)
(38.9%), the lack of accessibility to and availability of dis-
ease-modifying treatments (31.6%), lack of research in MS
issues (31.6%) and the non-availability of health services,
including MS centres (26.3%) (Figure 10.1).

S
M
th
40% e wi
l ls
op
8.4% r pe iona
fo ss
37.9%
u es rofe
s p
17.9% r is lth
ajo ea
35.8% M nd h
10.1 a 95
N=
31.6%
S
30.5% M
w ith nals
le essi o
0% op f
Pe pro
27.4% l t h
a
rt He
p po 14.7%
ia l su n 26.3%
oc ati S
o
o fs c 20%
ck du M
La n /e bout y 25.3%
o
ati lic a ilit
r m u b i l ab rapy 21.1%
o a
f inf of p n av the 22.1%
o o g
ck y /n ifyin e nt 2.1%
La bil
i t o d y m
e ssi se m m plo 22.1%
c s
n ac isea t o e
s su e 26.3%
d i
No of late
d
ted
e l a n
sr re tio y
ue ty ita
Iss c uri a bil erap 21.1%
i a l se f reh sioth e
c o y r
/so ity ph ca
ce a bil ing s of 1.1%
r a n a i l u d s t s
v l c o e 15.8%
ns
u
n a in
c
igh lac t
l t hi / no lities H l i c p spor 8.4%
a ity faci b
He i bil n pu tran c es
s s i g v i 14.7%
ce rs din ser ntre
s
n ac a rrie nclu l t h e
No al
b i a Sc of
he
ctur y of ing M f o rm nts
tr u ilit d in r gra
ras ab inclu ts g
Inf v ail n efi ts o din 1.1%
o na f be men i n clu care
N y o i t l e r e ite
t nt
bil
ila s, e
a
f c res
p ing
va port i t y o and c lud ent
a n
i ipm
n p nu e me equ
No e su o nti hom h o
c d
om of t
s a lise
inc ck ier ecia
La r r
ba f sp
al o
c tur ility
t r u s i b
ras ces
Inf n ac
no

42
 MAJOR ISS U E S 10

Implications
◆ GloballyMS is being managed in a medical model rather
than a model that combines medical and social needs.

13.7%
38.9% 21.1%
12.6%
4.2%
7.4%
4.2%
14.7%
7.4%
48.4%

is
os
i a gn ogy) 6.3%
d no l 9.5%
o
t ch
ted s/te ity
l a s i bil sts 5.3%
re es s i
u es proc a cce olog 31.6%
Iss e, r
non neu ups
(ti m /
ity of gro
bil ort
a ila p p n
v tio
na /su
No t ies g isla 5.3%
i e e
s oc n dl t i on 12.6%
S a ca S
o fM o licy / e du ut M 5.3%
a ck top t i o n abo
i l i ty 0%
L
ted a ls ab y
rm iona ail erap
r ela f o s v 4.2%
ues o f in rofes o n a ic th s 20%
Iss ck p /n at ue
La alth b ility tom S iss
he ssi ymp
of ce nM
n ac of s r c hi po
rt
2.1%
No s ea l s up
re c a 12.6%
f
o liti rs
La
ck f po t he
o O
ck
La lity
s s ibi ms
ce a
ac y te
on linar ity
n bil
i l
/
ity iscip e ssi rses
b cc nu
ila erd na S
a va f int / no of M
n o y
No ilit
ab
v ail
na
No

43
 S U M M A RY RESULTS
Epidemiology
◆ MS is a global disease – no country that responded to the
Atlas of MS survey was free of MS.
◆ MS is more common among women than men.
◆ Symptoms appear at around 30 years of age.
◆ The survey revealed the geographical patterns associated
with the disease.
◆ There is a lack of reliable, valid and robust data from epi-
demiological or economic impact studies and reports pub-
lished in medical literature (especially in Africa and parts
of Asia where the prevalence is reported to be low).
MS Organizations
◆ Many countries in the world have no patient-driven sup-
port for people with MS.
Diagnosis
◆ The availability and accessibility of magnetic resonance
imaging (MRI) technology varies widely.
◆ Time from onset of symptoms to diagnosis varies widely
– often being drawn out over many months or years.
◆ Inequalitiesin global wealth impact on the provision of
diagnostic services.
Information
◆ There are inequalities in the provision of basic and more
specific forms of information – in many cases the gap
between information required and received is vast.
44
Support and services
◆ Theneeds of people with MS do not inform decision-
making
◆ Health care professionals are not receiving any (or
enough) training to help them to identify and treat peo-
ple with MS.
◆ Thereis a lack of public and professional awareness of
MS and its impact.
◆ Thereis little understanding of the socioeconomic costs of
MS to individuals, families, carers and the community.
◆ Owing to inadequate education, advice and support,
people with MS are unaware of how best to cope with
their MS and remain in education or employment.
◆ In many countries mutual support groups do not exist.
◆ In many countries no aids or adaptations are available
from any source.
◆ Accessiblepublic transport is often unavailable or difficult
to use and there is little alternative transport support.
◆ Poor provision of respite is widespread.
◆ There is a need for better understanding of how transport
and drug delivery options will overlap with care and treat-
ment possibilities.
◆ Income inequalities have significant effects on the provi-
sion of treatment and services
◆ Peoplewith MS actively seek and use a wide range of
“complementary” or “alternative” remedies or treat-
ments which have not been tested in clinical trials.
◆ The findings confirm the key role played by MS organi-
zations.
 SUMMARY RESU LT S

Human resources Major issues

◆ Insome countries the lack of neurologists knowledgeable The major issues for people living with MS are:
about MS hampers diagnosis and the provision of treat-
◆ lack of social support
ments and therapy.
◆ lack of information and education of the public about MS
◆ There is a general lack of MS nurses.
◆ lack of access to and availability of disease-modifying
◆ Inadequate use is made of interdisciplinary teams in com-
treatments
munity settings.
◆ issues related to employment
◆ MS is being managed in a medical, not a social, model
of care. ◆ health insurance and social security-related issues.

Disability entitlements, legislation The major issues for health professionals involved in MS
and insurance care are:
◆ lackof information for and education of health profes-
There is a need to integrate health and employment teams
to improve vocational rehabilitation (a process whereby sionals about MS
people with MS can be enabled to access, maintain or ◆ issuesrelated to the time it takes to diagnose and the
return to employment or other useful occupation). process and technology required
◆ People with MS are often dependent on disability entitle- ◆ lack of access to and availability of disease-modifying
ments and cash assistance for their income. treatments
◆ The eligibility criteria, payment levels and administration ◆ lack of research in MS issues
of disability entitlements and cash assistance have a direct
◆ lack of health services, including MS centres.
impact on the quality of life of people with MS.
The major changes needed to improve MS care are:
◆ toinform and educate the public and health professionals
about MS
◆ to make health services, including MS centres and reha-
bilitation facilities, accessible and available
◆ develop MS societies and support groups
◆ improve and expand research into MS issues.

45
 T H E WAY F ORWARD
CONCLUSIONS AND SUMMARY OF ISSUES AND ACTIONS

The value of the Atlas of MS is in replacing

impressions and opinions with facts and figures. The find-
ings have specific implications for the work of health
professionals, patient groups, the health industry and gov-
ernments – and will inform national and regional advocacy
and development policies.

MS usually affects people when they are young, starting a

family and developing their career. The impact on the quality
of life of people with MS and the financial implications for
society are therefore long lasting and profound. The study
highlights worrying discrepancies between countries in their
support to people affected by MS and these discrepancies
are evident even within country groupings of compara-
ble economic development, such as the European Union.
We call on policy makers, health professionals and patient
groups to make use of the data in the Atlas of MS to act to
close those gaps.

The Atlas of MS can be used as a tool to raise awareness

of the global MS situation and encourage decision-makers,
public bodies and governments to:
◆ Raise greater awareness and understanding of MS in their
countries among the general public, employers and health
care professionals.
◆ Invest more in diagnostic tools and techniques.
◆ Invest in the education and training of health professionals.
◆ Stimulateand support the expansion of better research
into MS and MS issues.
◆ Develop and strengthen initiatives and structures to make
health services offering treatment and rehabilitation equally
available and accessible to all people with MS with a view
to keeping them in employment.
◆ Invest in and support the development of the capacity of
MS societies and patient groups to support public, private
and non-profit initiatives to develop public policy, service
provision and support.

All stakeholders need to invest in the way forward, to

improve the quality of life of people with MS, and to reduce
the long term financial impact on them and on society as
whole.

46
 LIST OF RESPONDE N T S

We are most grateful to the following country Country,

coordinators and their colleagues for taking the time and territory or area Name
effort to gather the information and data required to com-
plete the MS Atlas questionnaire:
Canada Deanna Groetzinger
Jon Temme
William J. Mcilroy
Country, Name
territory or area Chile Jorge Barahona Strauch

China (People’s Republic of) Xu Xianhao

Afghanistan Sayed Azimi
China, Hong Kong Special
Albania Vjollca Koko Administrative Region Lau Kwok Kwong

Algeria Ait Kaci Ahmed Mahmoud Colombia Jorgeluis Sánchez Múnera

Argentina Fernando J. Caceres Costa Rica Alexander Parajeles

Inés Acevedo Yamileth Ramirez

Armenia Felix Chilingaryan Côte d’Ivoire Thérèse Sonan-Douayoua

Australia Trevor Farrell Croatia Jasminka Matic

Rex Simmons Danica Eškic
Elizabeth McDonald Slava Podobnik-Šarkanji
W.M. Carroll Mirta Janeš

Austria Lüder Deecke Cuba Margarita Ruiz Peraza

Fritz Leutmezer María E. Moscoso
Helene Kallina Cesar Rapetti

Bahrain Adel Al Jishi Cyprus Pantzaris Marios

Bangladesh Anisul Haque Czech Republic Svatopluk Cablik

Barbados Sonia Wilson-Mwansa Democratic Republic

David O’Corbin of the Congo Daniel Tshala-Katumbay

Belarus Alexei Karchevski Denmark Einar Berdal

Gennady Makarevich Birgit Tüchsen
Anatoli Duk
Elena Tomashevskaya Dominican Republic Dana Guttmann

Belgium Christiane Tihon Ecuador Patricio Abad

M.B. D’Hooghe
Egypt Mai Sharawy
Benin Adjien Kodjo Constant
Estonia Mariann Klemets
Bosnia and Herzegovina Fata Bahtijarevic Maria Kütt
Azra Alajbegovic Katrin Gross-Paju

Brazil Suely Berner Ethiopia Guta Zenebe

Nadine Renzi Rossi
Dagoberto Callegaro Finland Anssi Kemppi
Juhani Ruutiainen
Bulgaria Alexandra Effisseneva Pia-Nina Vekka
Christo Balabanov
M.Klissurski France Jean-Marie Eral
Etienne Roullet
Burkina Faso Athanase Millogo Jean-Louis Dousset

Cameroon Callixte Kuate Tegueu Gabon Gertrude Mouangue Minso

47
 L I S T O F R E SPONDENTS

Country, Country,
territory or area Name territory or area Name

Georgia Rusudan Pantsulaia Lithuania Rasa Kizlaitiene

Marina Kiziria Aldona Droseikiene
Khatuna Mikaberidze
Luxembourg Freichel Paulette
Germany Dorothea Pitschnau-Michel René Metz
Gabriele Seestaedt Haan Yves
Hans-Peter Hartung Gansen Anja
Bernhard Hemmer Camporese Rina
Haas Fernand
Greece Anastasios Orologas
Madagascar Andriantseheno Marcellin
Guatemala Patricia Grajeda De Calderón
Malawi Terttu Heikinheimo-Connell
Guinea Yves Morel
Mohamed M’mah Diaby Malaysia Victor H.T. Chong

Haiti Marlange Jerome-Dutton Malta Leslie Agius

Norbert Vella
Honduras Marco T. Medina
Mexico Merced Velázquez
Hungary Andras Guseo Concepción Lujan Uranga

Iceland Sigurbjörg Ármannsdóttir

Moldova Lisnic Vitalie
Sverrir Bergmann
Mongolia Shuren Dashzeveg
India Bhim Sen Singhal
Morocco Mohamed Yahyaoui
Iran (Islamic Republic of) Mohammad Ali Sahraian
Namibia Bianca Ozcan
Iraq Khalid Ibrahim Mousa
Hamid Fakher Al-Azawi
Netherlands Marga Nijenhuis
Daeter-Hilgers-Hintzen
Ireland Graham Love
Rogier Hintzen
Stanley Hawkins
Nora Holtrust
Aidan Larkin

Israel Kahana Esther New Zealand Amy Greenwood

Ernie Willoughby
Italy Mario Alberto Battaglia
Grazia Rocca Nicaragua Jorge Martinez Cerrato

Japan Kazuo Fujihara Nigeria Adesola Ogunniyi

Jordan Ahmad Abu Zayyad Norway Kjell-Morten Myhr

Turid Hesselberg
Kazakhstan Zhannat Idrissova
Pakistan Abdul Malik
Kenya Juzar Hooker
Razia Mohamedali Paraguay Victor Fernando Hamuy Diaz de
Bedoya
Kuwait Suhail Alshammari
Peru Darwin Vizcarra
Latvia Guntra Cirule Ana Chereque
Maija Metra
Liga Mazure Poland Izabela Odrobinska
Skaidrite Beitlere Halina Bartosik-Psujek
Krzysztof Selmaj
Lebanon Bassem Yamout Zbigniew Stelmasiak

48
 LIST OF RESPONDE N T S

Country, Country,
territory or area Name territory or area Name

Portugal Jorge Da Silva United Arab Emirates Jihad Said Inshasi

Rui Pedrosa
United Kingdom of Great
Qatar Hassan Al Hail Britain and Northern Ireland Sharon Haffenden
Alasdair Coles
Republic of Korea Kwang Ho Lee Lynda Finn
Kathryn White
Romania Berha Mihaela Jane Petty
Vasile Titus Mihai
United States of America Nicholas G. LaRocca
Russian Federation Alexey Boiko Beverly Noyes
John Richert
Nancy Holland
Saudi Arabia Amal Abdulrahman
Susan Sanabria
Senegal Fatou Sene Diouf
Uruguay Carlos Oehninger Gatti

Serbia Tatjana Dakic

Venezuela Arnoldo Soto
Tatjana Pekmezovic
(Bolivarian Republic of)
Nevenka Rasic
Jelena Drulovic Viet Nam Le Duc Hinh
Vanja Taleski
Lenka Babic Yemen Hesham Awn

Singapore Benjamin Ong Zambia Masharip Atadzhanov

Slovakia Lubica Prochazkova Zimbabwe Jens Mielke

Slovenia Beatrika Koncan-Vracko

South Africa Jan Jakob Stephanus (Fanie) Du Toit

Girish Modi

Spain Águeda Alonso Sánchez

Sri Lanka Udaya Kumara Ranawaka

Sweden Arja Hill

Switzerland Vera Rentsch

Andrea Gerfin
Jürg Kesselring
Herbert Keller

Syrian Arab Republic Ahmad Khalifa

Thailand Naraporn Prayoonwiwat

The former Yugoslav

Republic of Macedonia Lodi Gogovska

Tunisia Chokri Mhiri

Turkey Aysegül Ünlüsoy

Aksel Siva
Nevin Sutlas

Ukraine Nehrych Tetiana

49
 ANNEX
GLOSSARY: DEFINITIONS AND DESCRIPTIONS OF TERMS USED
◆ Advice and advocacy: a combination of individual and social
actions and activities designed to provide advice and gain
political commitment, policy support, social acceptance and
health systems support for people with MS.
◆ Age of onset: the age of the person when the MS symptoms
first appeared.
◆ Audio-visual material: materials other than books that present
information in audible and pictorial form such as audio cas-
settes, video tapes, CDs, DVDs, slides, mp3s and mp4s.
◆ Complementary and alternative therapies: a broad set of
health care practices that are not integrated into the domi-
nant health care system. It could be a different approach
from conventional medicine (alternative) or used together
with conventional medicine (complementary). These could be
medication or non-medication therapies. Traditional medicine
is also in some countries used as a term for these therapies.
◆ Diagnostic criteria: as the symptoms, signs and course of MS
are diverse, diagnosis of MS is based on the identification
of a clinical syndrome and its progression over time. Various
diagnostic criteria have been proposed that group patients
into subcategories based on the “certainty” of diagnosis.
◆ Disability entitlements: can come from either the public
(state) or private (employer) sector. Disability entitlements
are benefits payable as a legal right in cases of MS that cause
physical, mental or intellectual impairment leading to func-
tional limitations.
◆ Disease-modifying drugs: a group of drugs that impact the
course of MS by slowing the progression of the disease and
decreasing or reducing the number, frequency and severity of
clinical attacks (also called relapses or exacerbations), reduc-
ing the accumulation of lesions within the brain and spinal
cord (damaged or active disease areas) as seen on MRI and
which appear to slow down the accumulation of disabilities.
◆ Education and training: to improve the knowledge of people
with MS and their carers, and that of health professionals and
society about MS, its consequences, and understanding of
psychosocial and occupational problems to encourage them
to cope actively with the disorder and live with as few limita-
tions as possible.
50
◆ Fatigue: the awareness of a decreased capacity for physical
and/or mental activity due to an imbalance in the availability,
utilization, and/or restoration of resources needed to perform
activity. Mental fatigue can vary between mild and severely
disabling and is usually exacerbated by exercise, and by
increased bodily or ambient temperature. Mental fatigue usu-
ally follows a daily pattern and many people with MS report
that they feel fine during the first few hours of the day but,
by afternoon or early evening, feel completely exhausted.
Fatigue in people with MS appears to be unrelated to physi-
cal disability status and many people with MS complain of
fatigue even when all their other symptoms are mild or in
complete remission.
◆ Health professionals: personnel involved in providing care to
people with MS such as doctors, neurologists, nurses, social
workers, physiotherapists and occupational therapists.
◆ Incidence: estimated number of new cases of MS diagnosed
over a defined period of time in a specified population usually
given as number per 100 000 population.
◆ Information: communication of knowledge by various chan-
nels regarding, for example, symptoms, prognosis, treat-
ment, support services, lifestyle, family issues, legislation and
research.
◆ Interdisciplinary teams: people with MS have complex needs
that require inputs from a variety of specialties and services.
These interdisciplinary teams could be hospital or community
based.
◆ Male/female ratio: the numbers of females with MS for
every male with MS.
◆ McDonald criteria: a set of clinical parameters utilizing
advances in MRI imaging techniques developed in 2001
(updated in 2005) by an international panel in association
with the NMSS and the MSIF. They make the diagnostic
process faster and more precise and are intended to replace
the Poser Criteria (1983) and the Schumacher Criteria (1965).
 AN N E X
GLOSSARY: DEFINITIONS AND DESCRIPTIONS OF TERMS USED

◆ Motor weakness/dysfunction or spasticity: include involun- ◆ Sensory symptoms: include burning, itching and electrical
tary contractions, jerking and twitching of muscles, muscle shock sensations, numbness/loss of sensation, tingling, buzz-
weakness, partial or mild paralysis, stiffness, restricted free ing, vibration sensations and loss of awareness of location of
movement of affected limbs, involuntary leg movements, body parts.
foot drag, slurred speech and related speech problems.
◆ Source of financing: in this context, out-of-pocket payments
◆ MS groups and organizations: a non-profit patient-driven refer to payments made for MS care by the consumer or his
organization that works on issues related to MS in the coun- family; insurance refers to a premium that the health care
try. It may also be called an association, society, league, feder- consumer voluntarily pays to a private insurance company
ation, foundation, union or other appropriate title, depending which, in return, pays for part or all of a consumer’s MS care
upon the regulations and/or practice of the country. services; government refers to money for health services
raised by taxation or through social insurance.
◆ MS neurologist: a neurologist whose professional interests
and activities are related exclusively or specifically to the care
of people with MS. He or she runs a clinic or service for MS
patients separate from other neurological practice, provides
overall management of care, neurological testing and evalua-
tion, and prescribes medications and monitors their effective-
ness.

◆ MS nurse: a licensed or registered nurse whose professional

interests and activities are related exclusively or specifically
to the care of people with MS either through direct practice,
research, education or administration.

◆ Prevalence: estimated total number of cases of MS at a par-

ticular point in time in a specified population usually given as
number per 100 000 population.

◆ Relapse: (also called a clinical/neurological attack, exacerba-

tion or flare-up) is the subacute appearance of a neurological
abnormality that must be present for at least 24 hours in the
absence of fever or infection and characterized by the sudden
worsening of an MS symptom or symptoms or the appear-
ance of new symptoms.◆ Respite care: refers to services that
provide people with temporary relief from tasks associated
with caregiving (e.g. in-home assistance, short nursing home
stays and adult day care).

◆ Self help and mutual support groups: mutual support is based

on the concept that people who share common experiences
can provide one another with emotional support, fellowship
and information. For people with MS and their families, mutual
support groups offer the opportunity to exchange experiences
and to give and receive support, information and encourage-
ment.

51
The results of the survey made for the ATLAS OF MS reveal a lack
of services and resources allocated to the care of people with MS.
The situation is of particular concern in most low and middle income
countries. The data clearly indicate that:

◆ no one country provides adequate resources;

◆ in many countries the resources that are available

are grossly inadequate;

◆ the availability of resources varies widely between

countries both within all regions and worldwide

The value of the Atlas of MS is in replacing impressions and opinions

with facts and figures.

This joint report by the World Health Organization and the Multiple
Sclerosis International Federation includes information from 112
countries, representing almost 88% of the world population.

It is hoped that this Atlas of MS will enhance knowledge and awareness

of the global and regional disparities in resources and services for
people with MS at country level and will help in the development of
policies and programmes for this group of people.

ISBN 978 92 4 156375 8

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