MS Barometer 2020
HPP was commissioned by the European MS Platform to develop a report and national factsheets based on the findings of a survey of MS societies in 35 countries across Europe.
MS (multiple sclerosis) is a chronic neurodegenerative disease, in which a person’s immune system targets healthy nerves. It is an unpredictable disease that each person will experience differently, but common symptoms often include pain, fatigue, reduced mobility and cognitive dysfunction.
The cause of MS is unknown and there is currently no cure. Most people receive a diagnosis between the ages of 20 and 40. Following diagnosis, management of MS focuses on reducing disease progression with treatment, managing symptoms and rehabilitation, to maintain quality of life and neurological function.
In 2008, the European MS Platform launched the MS Barometer to address knowledge gaps in MS management. In 2020, its sixth edition surveyed 36 national MS societies in 35 European countries and found that the quality of care received by people with MS is inadequate, with serious disparities across Europe.
Rates of treatment with disease-modifying drugs vary widely, ranging from 90% in Lithuania, Malta and Switzerland to just 12% in Serbia and 10% in Bosnia and Herzegovina. Availability of treatments to manage symptoms is even lower. Meanwhile, fewer than half of Europeans with MS have access to rehabilitation, and many face significant barriers to joining and staying in the workplace.
The MS Barometer 2020 makes several recommendations to reduce the identified gaps in care and champion evidence-based policies that will improve the lives of all people with MS. The report is accompanied by 35 factsheets analysing MS care in 35 European countries.
What we’ve achieved
The European MS Platform (EMSP) commissioned HPP to conduct research and analysis of the results of a survey it had conducted among national MS societies in 35 countries across Europe.
HPP worked with Quality Health, which performed the quantitative analysis of the survey results and prepared report graphics. We then analysed the findings and developed the MS Barometer 2020 report, along with individual factsheets for each participating country. We also prepared communications resources for EMSP to use in disseminating the report. The report and factsheets were designed by EMSP.
Key partners and stakeholders
EMSP convened an expert steering committee to develop the 2020 MS Barometer survey with the support of the Copenhagen Institute for Futures Studies.
The report and factsheets were written by Catherine H. Whicher and Christine Merkel of HPP, with Nora Kriauzaitė, Elisabeth Kasilingam and Emma Rogan of EMSP, and contributing analysis from Tom Albone, Adam Taylor and Daniel Ratchford of Quality Health.
HPP received funding for this project from EMSP. EMSP would like to thank the sponsors who have financially supported this project, including Almirall, Biogen, Bristol Myers Squibb, MedDay, Merck, Mylan, Novartis, Roche and Sanofi Genzyme. EMSP retains editorial control of the MS Barometer.