Yes! Please follow the Global PROMS initiative on LinkedIn and we will share all the results when they are available. Or, you can sign up for MSIF’s ‘MS Connections’ newsletter, where we will also provide updates about the PROMS initiative.

Of course – if you require help, it is no problem to have a family member or friend fill this in on your behalf.

We estimate the survey will take approximately 30 minutes to complete. You can pause the survey and come back it later, as long as you are using the same computer and internet browser. Please note that participation in the survey is voluntary and you can stop at any time.

The survey was developed by the PROMS ECT members working with members of the Working Group 3 (eHealth). Members of the ECT advised on the survey design and questions. The survey was piloted, revised, and translated before being launched.

Please email surveyproms@fismets.it and someone will be in touch as soon as possible.

Patient-reported outcomes (PROs) are a way for doctors and researchers to learn how patients feel and how they’re doing when dealing with a medical condition or treatment. Instead of just relying on medical tests and doctor’s observations, PROs ask patients to share their own experiences and feelings. For example, if you have a chronic illness, a PRO could be reported through answering questions such as:

• How much pain are you feeling on a scale of 1 to 10?
• Are you able to do your daily activities without trouble?
• How is your overall quality of life?

By collecting answers directly from people affected by MS, healthcare providers can get a better understanding of how a condition or treatment is affecting a person’s life and well-being. It helps people make healthcare decisions that are not just based on medical tests but also on how individuals actually feel.

The PROMS Engagement Coordination Team (ECT) is a group of people who are affected by MS, plus representatives from MS organisations. We define ‘people affected by MS’ as individuals who either have MS or care for an individual with MS. As experts of MS through lived experience, the ECT plays a crucial role in making sure that the voices of those affected by MS, including patients, their families, and caregivers, are heard across all parts of the PROMS initiative.

Members of the ECT work closely with other teams in the PROMS initiative to figure out where involving people with MS will bring the greatest benefit to the various projects, who needs to be involved and how to involve them.

Find out more about the PROMS Initiative, our vision and mission, on our homepage.

The European Charcot Foundation and the MS International Federation (MSIF) lead and coordinate this initiative, building on the experience and expertise of the Italian MS Society, which acts as the lead agency on behalf of the global MSIF movement. To learn more about who is involved, see our governance page.

This survey is for people aged 18 and older who have a diagnosis of MS. We value your personal opinion – there are no right or wrong answers.

The PROMS Initiative global survey aims to learn what really matters to people with MS all around the world. We want to listen to as many different voices as possible, so that the research and healthcare being developed is based on what people with MS actually need.

This survey aims to understand attitudes towards using digital tools such as apps and websites on smartphones, tablets and computers and wearable devices (such as smart watches or rings) to capture information about your experiential knowledge. We want to explore what digital tools are available to people with MS worldwide, potential advantages to using them, concerns you may have about digital tools (including data security), and any barriers to using these tools over a long time period.

We have created the survey in English German, Spanish, French, Portuguese, and Italian to enable people from different countries to share their thoughts, to get a global view of what life with MS is like.

This survey – created by people with MS, for people with MS – will collect valuable data about what is really important for people with MS across the world in relation to using digital tools.

Once analysed, we don’t just want the data to be published in a scientific paper (although that is important too) – we want it to be used.

Results from this survey will feed into recommendations for researchers and companies that develop digital technology that is used by people with MS. It will help identify which currently available tools are working well, and what needs to be improved.

Some of the impacts we expect to arise from the results of this survey include:

• Validating patient perspectives: by showing that what people with MS experience is important to them and deserves attention from researchers, healthcare professionals, and policy decision-makers.
• Holistic care: encouraging a focus not only on DMTs, but also on other vital aspects of patients’ lives, like managing fluctuating symptoms, mental health, and overall well-being.
• Health apps and technology: recommendations for what type of information apps and tools that help people manage their MS should be collecting. These tools can be designed to make it easier for people to help manage their own health, and share their experiences with their healthcare professionals.
• Better communication: by understanding what’s most important to patients, healthcare professionals can improve their communication and collaboration with those affected by MS. This fosters a sense of partnership in care, where patients’ voices and concerns are respected and taken seriously.