A survey co-created with patients

What if your experience of living with Multiple Sclerosis helped thousands of people?

Let’s start the survey

What if your experience of living with MS helped thousands of people?

A survey co-created with patients

The survey aims to understand the symptoms experienced by people living with MS and which ones have the greatest impact on their lives. It was developed in collaboration with an expert research team as well as people affected by MS, who played a crucial and active role in the process.


Frequently Asked Questions (FAQ)

Want to know more? Explore our questions and answers below.
Can I find out the results of the survey?

Yes! Once you have completed the survey, please visit the Get Involved page where you can give us your email. We will contact you to share the results and what the next steps for this project are.

Can someone help me fill the survey in?

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

How long will it take? Do I have to fill the survey in all in one go?

We estimate the survey will take approximately 15 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.


How was the survey developed?

The survey was developed by the PROMS ECT members working with members of the Working Group 1 (Research, Development and Validation), and supported by an external research team from Qualitative Research Unit – Azienda USL – IRCCS (Reggio Emilia), Italy. Members of the ECT developed the list of ‘functional domains’ and their descriptions, and advised on the survey design and questions.  The survey was piloted in all languages to around 100 people with MS.


How will you keep my personal information safe?

The survey is completely anonymous, and it will not be possible to trace your identity in any way in full compliance with the current privacy legislation in Europe (GDPR – Regulation 2016/679). The Data Controller is the Italian Multiple Sclerosis Foundation – FISM ETS leading agency on behalf of the MSIF of the Global PROMS Initiative. The survey is available on the platform Survey Monkey (https://www.surveymonkey.com/mp/legal/privacy/), Data Processor, regularly provided by FISM.


I need help, who can I contact?

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

What are patient-reported outcome measures (PROMs)?

Patient-reported outcome measures (PROMs) are the tools that can be used to capture how patients feel and how well they’re doing in a more structured and standardised manner. These could be something like questionnaires with a standard list of questions or rating scales.

The answers you give are then turned into numbers or scores that can be compared and analysed. These scores help your healthcare team, yourself, or researchers track changes in your health over time, and can also be used to measure the effect of certain treatments or therapies.

What are patient-reported outcomes (PROs)?

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.

What is the PROMS Engagement Coordination Team (ECT)?

The PROMS Engagement Coordination Team (ECT) is a group of 7 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.

What is the PROMS Initiative?

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.

Who is the survey for?

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

Why has the PROMS initiative developed a survey for people with MS?

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 focuses on which symptoms or experiences are most important to people affected by MS, and which have the greatest impact on everyday life.

In the survey, we group together different MS symptoms and experiences and call them “functional domains.” It’s like looking at all the different parts of life with MS. 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.

Why should I take part in the survey?

This survey – created by people with MS, for people with MS – will collect valuable data about what really matters most for people with MS across the world.

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.

Initially, results from this survey will feed into a prioritisation study (a ‘Delphi’ exercise) to come up with a shortlist of the functional domains that are most important to people across the world. This shortlist will then feed into many more research studies, recommendations for patient care, and policy-making.

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.


PwMS Engagement Coordination Team (ECT)

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