Assessing the Impact of Multiple Sclerosis Symptoms (IMSS) on the quality of life of people with MS to provide personalised care and support

Tell us how Multiple Sclerosis Symptoms are impacting your life?  

Background and rationale 

Through its MS Barometer in 2020, EMSP has highlighted the current gaps that health and social systems across Europe have in providing quality symptomatic care to people with Multiple Sclerosis (MS). Understanding the symptoms of MS has not been prioritized and symptoms are not adequately and equally managed. Consequently, there is lower availability and lower reimbursement of symptomatic treatments, including medication, rehabilitation in all its forms, while there is little attention to lifestyle changes. 

For this reason, EMSP alongside 25 national MS Societies and with the support and leadership of MS experts across Europe, will be leading on this research project titled Impact of Multiple Sclerosis Symptoms (IMSS) survey to shed light on the symptoms of MS, their prevalence and severity and how they are being management across Europe.  

Documenting MS symptoms, their severity and how they are affected by MS symptomatic care and in return, how they affect the quality of life and disability is crucial at this stage and cannot be delayed. The aim is to further understand MS symptoms and what the best care that people living with MS are adopting and that are the most impactful to their quality of life. 

This research will, therefore, serve as a catalytic agent for advocacy on MS symptom management and will aim to develop scientific and advocacy publications to catalyze the development of harmonized and personalized approaches of management, treatment, and care. 

Aims of IMSS 

1. Measure and communicate the prevalence, clustering, burden (severity) and management of MS symptoms across EU and per country. 
2. Sensitize individuals with MS about the presence and impact of MS symptoms (self-awareness), allowing them to raise proactively their symptoms situation in their contacts with healthcare professionals 
3. Explore the relationship between onset and severity of MS symptoms and past and present use of Disease Modifying Drugs as well as adopted management systems. 
4. Contribute to the definition of a possibly new image of the disease in Europe, thus influencing the improvement of symptomatic and pathogenetic treatment as well as multi-disciplinary rehabilitation.  
5. Provide Patient Reported Evidence that enables the development of policies promoting the improvement of quality of life for people with MS by means of enhanced medical and rehabilitation care. 

How and when will IMSS take place? 

The survey will be an anonymous online questionnaire, in all national languages of participating countries (details below). It is estimated that the survey will take 20 minutes.  

The survey will include 4 sections after the background and consenting: 

• Sociodemographic data and disease history including age, gender, ethnicity, employment, education, country, onset of symptoms and diagnosis, caregiver presence, living arrangements, presence of comorbidities, use of disease modifying drugs, as well as mobility and quality of life 

• MS symptoms, their presence and severity 
• Treatment and care methods adopted by people with MS  
• Satisfaction with how people with MS are currently managing their symptoms.  

The survey is launched on 10 May 2023 and will be running until the end of August 2023.  

Who can participate? 

Any person diagnosed with MS in the countries participating can take part in this survey after consenting. People with MS under the age of 18 will require the consent of their caregivers/parents. 

The aim of IMSS is to reach 20,000 people with MS. 

The survey will be disseminated to MS communities through 25 MS Societies from 23 participating European countries, including Belgium, Croatia, Czech Republic, Denmark, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovenia, Spain, and Switzerland.