limitations

The data collected in the course of this project will have a number of limitations. These should be kept in mind when viewing the results.

missing data

While best attempts have been made to obtain information from as many countries as possible, some have not been able to provide details about certain issues. The most common reason for missing data is that such data simply does not exist within the countries in question. It is hoped that these information gaps will be filled in the future and that the Atlas of MS web site remains a live project.

misinterpretation

As far as the definitions of certain concepts are concerned, the Atlas of MS web site is based on the working definitions 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 terms like “primary care”, “community care” and “health information systems” vary from country to country. As a result, countries may have had difficulty in interpreting the definitions provided in the glossary and in reporting accurate information, although discussion with MSIF/WHO staff has hopefully minimised this issue.

Furthermore some countries may have had difficulty providing information about the health budget as it applies to MS because care in their country is integrated within the primary care system, something that is advocated by WHO.

generalisation

Where possible, questions were framed so that countries can respond with 'yes' or 'no'. Although this facilitated the gathering of information, it may be that this has been at the expense of identifying subtle differences in coverage and quality. Thus information related to implementation of policies, programmes or legislation, type of disability benefits, quality of services available at primary or community level, quality of services available for special populations, quality of services provided by non-governmental organizations and quality of information gathering systems cannot be gauged from this data. Attempts have been made to incorporate qualitative data from several sources, but this is still limited.

The information collected on the number of professionals gives the average figure for the country but does not provide information about distribution across rural or urban settings or distribution across different regions within the country.

limited sources

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 neurologists, MS patient groups or other experts with an interest in MS.

The most important limitation of the dataset is that in some cases only one key person in each country was the source of all information. Although the respondent was normally a senior professional specialising in MS who had access to numerous official and unofficial sources of information, the received data should still be considered as reasonable but not completely reliable and accurate. In some instances the data are the best estimates by the respondents.

incomplete

Some of the limitations of the data are due to the fact that they have been collected primarily from voluntary sector sources. It is possible that information about the public and private sectors 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 drugs at primary care level. Some of the data may be old and it is hoped that countries will help update the information as new data becomes available.

While all possible measures have been taken to compile, code and interpret the information given by countries using uniform definitions and criteria, it is possible that some errors may have occurred due to inaccuracies of the data.

further development

MSIF welcomes corrections and comments on the data and information provided on the Atlas of MS website.

The MSIF Atlas of MS web site is an ongoing activity. As more comprehensive information about resources available to diagnose, inform, treat, support, manage and rehabilitate people with MS people become available, and the concepts and definitions of resources become more refined, it is hoped that the site will continue to improve both in terms of coverage and quality of data.