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 24 national MS Societies and with the support and leadership of MS experts across Europe, are 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. Sensitise 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 is IMSS taking place? 

The survey was an anonymous online questionnaire, in all national languages of participating countries (details below). It is estimated that the survey took 20-30 minutes.  

The survey included 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 was launched on 10 May 2023 until the end of August 2023.  Data collection has now been closed. The EMSP team is in the process of analysing and interpreting the data collected.

Who participated? 

Any person diagnosed with MS in the countries participating was able to take part in this survey after consenting. People with MS under the age of 18 will require the consent of their caregivers/parents. The survey reached 17,151 people with MS. 

The survey was disseminated to MS communities through 24 MS Societies from 22 participating European countries, including Belgium, Croatia, Czech Republic, Denmark, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Lithuania, Luxembourg, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovenia, Spain, and Switzerland.

This project is still ongoing. Data and findings are being analysed and interpreted. Findings are expected to be finalised by mid-2025.

Check more updates here:

• IMSS survey launch post.
• IMSS data collection progress and how you can be involved.
• Preliminary results at EMSP’s 2024 annual conference.
• Preliminary IMSS findings presented at RIMS 29th annual conference.
• Presenting IMSS poster at ECTRIMS 2024.