A Mapping Study Comparing Educational Resources for Multiple Sclerosis Patients across the USA, Latin America, Middle East and Asia-Pacific Regions

Background: The MS in the 21^st Century initiative, led by a Steering Group of international multiple sclerosis (MS) specialists and patient advocates, focusses on developing programmes to improve the education of and communication between healthcare professionals and people with MS (PwMS).¹ In 2016, a mapping exercise was conducted to capture the existing online educational resources for PwMS in Europe and Canada.² This further research captures a snapshot of online educational offerings for PwMS across the USA, South America, Middle East and Asia-Pacific regions.

Objectives: To identify the diversity and number of online patient educational resources available for PwMS across the selected regions.

Methods: Desk research using the Google search engine with pre-determined search terms mapped resources on the first two Google results pages. Stakeholders that hosted/produced a resource were categorised into 9 types, including, patient associations, pharmaceutical companies, healthcare/government services, social media, and MS centres/clinics. Resources were categorised into 53 topics with 9 overarching themes and 15 formats based on online accessibility.

Results: A total of 8,139 resources were mapped in 34 countries, originating from 649 stakeholders. The highest region resource total was from the United States (45%) followed by Asia-Pacific (24%), South America (16%), and Middle East (2%); resources that spanned regions were categorised as international (13%). The most common topic identified was treatment (28%) followed by information on invisible symptoms such as mental health and fatigue (16%).  Rarely identified topics were resources on dealing with consultations (3%) and information for families and carers (1%). Patient associations and advocacy groups accounted for 16% of stakeholders and produced 42% of resources. Online media and social media, including blogs, were the most common stakeholder types (44%) and produced 16% of resources

Conclusions: The number of educational resources available to PwMS varied according to region and stakeholder. Most resources were hosted/produced by patient associations and advocacy groups; but this study did not investigate how PwMS were accessing these resources or their validity/usefulness. The large proportion of blogs and social media stakeholders versus resources may indicate MS patients use the internet to find out about their disease and share their story; but these resources could include inaccurate information.

References:

1. Rieckmann P et al. Multiple Sclerosis and Related Disorders 2018; 19:153–160
2. Rieckmann P et al. Multiple Sclerosis Journal 2017; 23, 3_suppl: 680–975