The information and data contained in the Multiple Sclerosis International
Federation (MSIF) Atlas of Multiple Sclerosis (MS) web application was
collected using a
questionnaire developed by MSIF, the World Health Organization (WHO)
and a number of senior MS professionals.
Collecting information in a uniform format from all the countries was a complex
exercise. A series of steps were followed.
In May 2005 MSIF and WHO met to discuss which topics and themes should be
considered in the Atlas of MS questionnaire. A draft questionnaire and
glossary of terms were prepared. The glossary of terms ensured that the
questions were understood in the same way by different respondents. In June
2005 the draft questionnaire and glossary were reviewed by a Work Group of
selected experts at a meeting at the Institute of Neurology in London.
In July 2005 the resulting draft questionnaire was pilot tested in two
countries (one developed, the other developing) and the feedback on the
difficulties presented by both the glossary and draft questionnaire were
taken into account in arriving at the final version.
In July 2005 the resulting questionnaire was pilot tested in two countries (one
developed the other developing) and the feedback on the difficulties presented
by both the glossary and questionnaire were taken into account in arriving at
the final version.
The final questionnaire covered a wide range of issues as they related to
epidemiology and national policies and practices affecting people with MS. This
included, for example, details of legislation, budgets, disability benefits,
patient organisations, facilities for neurological conditions in primary and
community care, numbers of health professionals, involvement of
non-governmental organizations, information gathering systems, special
programmes for sub-populations and therapeutic drugs. The questionnaire was
broken down into the following 8 separate sections:
Epidemiology of MS in the country
Multiple Sclerosis (MS) Groups and Organizations in the country
Support available to people affected by MS in the country
Diagnosis of MS in the country
Management of MS in the country
Treatment of MS in the country
Quality of life of people with MS in the country
Issues in MS care in the country
The second step of the process involved identifying the most relevant and
appropriate person to be invited to act as country coordinator to coordinate
the completion of the various sections of the questionnaire.
It was clear that in many cases the person identified (and immediate
colleagues) may not have been in a position to answer all sections of the
questionnaire so we asked those people invited to act as country coordinator to
consider which individuals, groups and organizations in the country would be
best placed to provide the information and data.
For those countries with MSIF member societies or corresponding organizations,
the country coordinator was either the senior staff member or volunteer of the
society or the country representative on the MSIF International Medical &
For countries where no prior relationship with MSIF existed, the country
coordinators were WHO contacts developed through the production of the WHO
Atlas for Neurological Disorders.
Once identified, the contacts were approached in August 2005 with information
about the project, a request that they act as country coordinators and a
request that they consider which individuals, groups and organizations in the
country will be best placed to complete the various sections of the
In September 2005, the questionnaire was sent to 98 country coordinators
spanning all WHO regions and continents, with a request that they coordinate
the completion of the questionnaire using all possible sources of information
and to follow the definitions provided in the glossary so as to maintain
uniformity of the information. 77 of the 98 countries confirmed their intention
to complete the questionnaire.
The Atlas of MS Project Work Group responded to questions and requests for
clarification. Repeat requests for completion of the questionnaire were sent to
the country coordinator in cases where there was delay in procuring 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. By the end of March 2006, 60 of the 77 countries had completed
and returned the questionnaire.
The data was standardized, cleaned and tidied. An electronic database was
created and populated with the data. Population figures have been taken from
the World Health Report 2000 (WHO, 2000).
The final step involved sending all data back to the country coordinators for
updating, correction and/or final approval prior to public launch of the Atlas
of MS website in May 2006.