Methodology

Data Collection

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.

Step One

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

Step Two

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 & Scientific Board.

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 questionnaire.

Step Three

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.

Step Four

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).

Step Five

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.