Project Document: European Map of MS
Undertaken by Paul Rompani on behalf of the European MS Platform (EMSP).
European Map of MS
To produce a booklet of illustrated data (highlighting its salient findings, implications and limitations) from all European countries (see Annex 1) on the epidemiology of MS and the availability and accessibility of resources (therapies and services) related to the treatment, rehabilitation and management of MS (see Annex 2).
A 28 or 32 page colour booklet also accessible as a downloadable pdf or Word document.
Used by people affected by MS, MS researchers, MS health professionals, MS societies, governments, supranational bodies (such as the EU) and others as:
An information and research resource.
A comparative analysis tool.
A tool to support advocacy initiatives.
Increase awareness of MS on national, European and global levels.
Input into the EMSP ‘European Guidelines on MS Rehabilitation,
Treatment and Management’.
Key tasks and Timeline:
Estimated timescale from initial development to final product to be
11 months from mid October 2003 to the end of September 2004:
Define terms and develop glossary
Establish Work Group
Gather completed questionnaires
Input data (combined with rehabilitation data previously gathered by EMSP).
Update EMSP in Brussels
Feb 17 2004
Design annotated tables, graphs, graphics and charts
EMSP to interpret ‘implications’ of data and develop recommendations
Present initial results in Prague
April 28 2004
Include EMSP ‘implications’ in booklet text
Design and format colour booklet with external contractor
Produce colour booklet with external contractor (1000 copies)
Launch and distribute
Sep 27 2004
The data collected and presented will have a number of limitations as highlighted in Annex 3. These should be kept in mind when viewing the results.
One day a week of Paul Rompani’s time.
EMSP Member Society CEOs, staff and volunteers will complete a number of tasks on a voluntary basis (such as questionnaire approval and questionnaire completion). In addition assistance will be required from health professionals and specialists working with MS societies as well as government officials.
The production of the final booklet will require the skills of graphic designers and printers, which will have associated costs.
Paul Rompani, International Development Manager, MSIF.
Christoph Thalheim, Secretary General, EMSP.
Dr Aleksandras Kirjazovas (Lithuania)
Prof Per Soelberg Sorensen (Denmark)
Dr Mario Battaglia (Italy)
‘European’ members of the WHO Working Group on MS:
Prof Jurg Kesselring (Switzerland)
Prof Alexei Boiko (Russia)
Prof Hans-Peter Hartung (Austria)
Dr Leonid Prilipko (WHO)
Prof Aksel Siva (Turkey)
Prof Alan Thompson (UK)
Dr Sharon Warren (Canada)
Annex 1 : Questionnaire Distribution
Article I of EMSP’s Internal Rules state that ‘Europe is defined as bounded by Scandinavia including Iceland, in the North, to the Mediterranean Sea including the islands therein to the South, from the Iberian Peninsula in the West to the West shore of the Baltic Sea and the Ural Mountains in the East.’
Europe Country List
Questionnaires will be sent to national MS societies in the following countries:
Annex 2 : Epidemiology of MS and MS Resources
Epidemiology of MS
The epidemiology of MS includes the incidence, prevalence and total number of people with MS
Incidence is the estimated number of new cases of MS diagnosed over a defined period of time in a specified population i.e. how many new cases a year e.g. 1.8/100,000. The incidence of MS is not as commonly quoted as the prevalence but is the figure used to estimate the likelihood that MS will affect an individual.
Prevalence is the estimated total number of all new and old cases of MS at a particular point in time in a specified population i.e. how widespread MS is amongst the population e.g. 75 per 100,000. The prevalence of MS is the most commonly quoted figure after the total number of people with MS in a country or region.
Total number of people with MS is the estimated total number of cases of MS in a country at a particular point in time.
MS resources include all resources available for the treatment, rehabilitation and management of (people with) MS whether provided by non-profit, for profit or public sources. For example:
· Access to diagnostic investigations (e.g. MRI scans, spinal taps and evoked potential tests) and the diagnostic criteria used.
· Access to information (e.g. telephone Helpline, booklets, audio-visual materials, websites, magazines, newsletters, journals and leaflets).
· Access to treatment (e.g. acute, symptomatic and disease-modifying) and the criteria for its use.
· Access to health professionals (e.g. neurologists, MS nurses, GPs).
· Access to rehabilitation services (e.g. urologist, gynaecologist, neuropsychologist, physical, occupational and speech therapists, social worker).
· Availability of facilities (MS centres, hospitals, holiday homes/respite centres, rehabilitation centres, nursing homes, day centres, palliative care).
· Public expenditure as % of total budget.
· National MS research expenditure.
· Availability of benefits and tax credits.
Annex 3 : Limitations
While every attempt will be made to obtain information from as many countries as possible, some, nonetheless, will not be able to provide details about certain issues. The most common reason for missing data will be that such data simply do not exist within the countries.
As far as the definitions of certain concepts are concerned, the project will use working definitions used by WHO, and other organisations, arrived at through consultations with experts. The aim is to strike a balance between the definitions that are most appropriate and those that the countries currently use. At present, definitions for some terms vary from country to country. As a result, countries may have difficulty in interpreting the definitions provided in the glossary and in reporting accurate information.
Most of the questions will be framed, so that countries can respond with ‘yes’ or ‘no’. Although this will help with the quick gathering of information, it fails to take into account differences in coverage and quality. Thus information related to implementation of policies, programmes or legislation, type of disability benefits, distribution of resources among rural and urban settings, quality of services available cannot be gauged from this data. E.g. the information collected on the number of neurologists will give the average figure for the country but will not provide information about distribution across rural or urban settings or different regions within the country.
Some of the limitations of the data are due to the fact that they have been collected primarily from national MS society sources and their contacts. It is possible that information about the public and corporate sector may be incomplete and may not be representative of the actual figures for the country. Some details may also be missing because the respondents did not have access to the information. This is especially true of the sections on financing and the availability and cost of treatments.
Some of the data may be old and it is hoped that countries will help EMSP to update the information as new data become available. While all possible measures will be taken to compile, code and interpret the information given by countries using uniform definitions and criteria, it is possible that some errors may occur due to inaccuracies of the data.
The EMSP European Map of MS will be ongoing projects of EMSP and as more accurate and comprehensive information covering all aspects of the epidemiology of MS and MS resources become available and the concepts and definitions of resources become more refined, it is hoped that the database and its findings will also become better organized and more reliable.
Text adapted from original text related to limitations of gathering and presenting data for the WHO Project Atlas: Mental Health Resources in the World 2001.
European Standards of Therapies
Information to be available later