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 prioritised 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. 

How and when did the IMSS research take place? 

The survey was an anonymous online questionnaire, in all national languages of participating countries.

The survey included 4 sections, following 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.

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.

Findings

The IMSS survey gathered responses from over 17,000 people with MS across 22 European countries, offering a unique snapshot of the real-life experiences of symptom burden, management, and care.

The results show that people with MS experience an average of 14 symptoms, with fatigue, cognitive impairment, and mobility issues among the most common and debilitating. Despite this, many respondents report limited access to personalised and coordinated care, particularly for invisible symptoms. These findings provide robust, cross-country evidence to support national advocacy, improve service delivery, and influence policy for better MS care across Europe.

What’s next?

EMSP and member organisations will use these findings to:

• Advocate for improved access to symptom management and rehabilitation services
• Inform healthcare professionals and policymakers about the unmet needs of people with MS
• Raise awareness of invisible symptoms that affect quality of life

We invite healthcare professionals, policymakers, MS advocates, and people with MS to explore the findings below and work with us to improve MS care in Europe.

EMSP is planning to publish these findings in a peer-reviewed journal by end of 2025. EMSP will also make the data of the IMSS research available to ensure partners can explore this rich data from various perspectives. Please reach out to EMSP if you are interested.