MS in the 21st Century Mapping Study to Quantify the Educational Offerings for Patients from Multiple Stakeholders in the Field of Multiple Sclerosis

Background:

The MS in the 21^st Century initiative began in 2011 and is led by a steering group (SG) of international multiple sclerosis (MS) specialists and patient advocates. In 2016, the SG focussed on developing programmes to improve the education of and communication between healthcare professionals and people with MS (PwMS).  To inform the development of these programmes the SG decided to capture the existing educational offerings for PwMS.

Objectives:

To report the findings of a comprehensive mapping exercise to identify the scope, diversity and number of patient educational materials available for PwMS across Europe and Canada provided by a broad range of stakeholders involved in the care and education of PwMS.

Methods:

Educational resources in Europe and Canada were recorded using pre-defined mapping parameters. A combined approach of desk research and telephone interviews investigated resources from stakeholders including: patient associations and advocacy groups, pharmaceutical companies, educational institutions and providers, healthcare/government services, and MS centres/clinics. This research model will be extended to include participants from other global regions.

Results:

From the 21 countries mapped, 1,605 different educational resources were identified, which included websites and online information, leaflets, and patient videos. The most common topics identified were general MS disease information, lifestyle advice, and treatment information, accounting for 62% of materials. Less frequently identified (6% of all materials) were materials which dealt with effective patient–physician communication, specific information on diagnosis, disease stages and progression. Out of 1,605 materials mapped, the highest single country total was from the UK (322).  Materials were produced primarily by patient associations (50%), while pharmaceutical companies (14%) and treatment clinics (12%) also contributed a variety of materials available.

Conclusions:

This research demonstrated that there is a large offering of educational materials for PwMS but the type and number of materials varies between countries. Most materials were accessed through patient associations, although pharmaceutical companies also contributed. There was a good offering of general information about MS for patients, but information on specific topics, including education around communication with healthcare providers was lacking across all countries mapped.