Impact of Multiple Sclerosis Symptoms (IMSS)
In 2020, EMSP's MS Barometer revealed substantial disparities in the way health and social systems across Europe are providing quality symptomatic care to people with Multiple Sclerosis (MS). The Barometer uncovered that symptom management is not given priority, leading to a lack of availability and poor reimbursement of symptomatic treatments such as medication and rehabilitation, and no attention being given to lifestyle changes.
One of the main recommendations stemming from the MS Barometer was to push European countries to prioritize and improve access to appropriate MS therapies to manage symptoms and to expand access to physical, psychological, cognitive, and occupational rehabilitation, all the while developing guidance on the use of symptomatic therapies to ensure harmonized approaches in symptom management. However, to back up the expansion of management care and harmonized guidelines, there ought to be a deep understanding of the current state and nature of MS symptoms and their management among people with MS in Europe.
Aims of IMSS
- Measure and communicate the prevalence, clustering, burden (severity) and management of MS symptoms across EU and per country.
- 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
- 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.
- Contribute to the definition of a new image of the disease in Europe, thus influencing the improvement of symptomatic and pathogenetic treatment as well as multi-disciplinary rehabilitation.
- 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.
It is essential that we document MS symptoms, including their intensity and how they are impacted by MS treatments, as well as how they influence quality of life and disability. The goal is to gain further insight into MS symptoms and to determine the most effective care practices that people living with MS are using to improve their quality of life. The purpose of this research is to advocate for better management and care of MS symptoms. From this research, scientific and advocacy publications will be developed to catalyse the promotion of harmonized and personalized approaches to treatment and care.
In 2022, the Scientific Working Group for the IMSS project has been developed and had convened twice; the survey was developed, revised by MS experts and MS Societies; an ethical committee reviewed the research and survey, provided feedback and approval; the plan for dissemination and launch of the survey has been developed, and last but not least the development of the online platform for data collection is in progress. It is planned that the IMSS survey will be launched end of March 2023, aiming to reach 20,000 participants, with data collection to span three months, till June 2023. Data management, analysis and reporting will all take place in 2023.
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