Impact of Multiple Sclerosis Symptoms (IMSS) Survey Now Live!

We are pleased to announce that the Impact of Multiple Sclerosis Symptoms (IMSS) survey is now officially live!

Why is this survey important for people with Multiple Sclerosis?

There is currently no prioritization on how MS symptoms manifest among patients in Europe nor is the management of those symptoms prioritized and equally supported in Europe. 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 MS. 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 from 23 countries 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
• How they are being managed across Europe

Documenting MS symptoms, their severity and 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. It will also serve as a catalytic agent for advocacy on MS symptom management to push for the development of harmonized and personalized approaches of management, treatment, and care of MS.

How and when will IMSS take place?

The survey will be a confidential and voluntary online questionnaire, in all national languages of participating countries (details below). It is estimated that the survey will take 20 to 30 minutes of your time.

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

• Sociodemographic information 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 therapies, 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 open for 4 months until August 2023.

Who can participate?

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

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.