The latest news from MS21

What do patients want? Identifying a disconnect between patient and HCP priorities


“The single biggest problem with communication is the illusion that it has taken place” – Bernard Shaw.

Throughout our daily lives, we all come across situations where we feel that our voice just isn’t being heard – we can feel that we aren’t being properly understood, or we are just not singing from the same hymn sheet – whether this be at work, at home, or with family and friends. For people with MS though, perhaps the most important time to feel you have good ‘harmony’ in a relationship is when communicating with your healthcare team. The relationship people with MS (PwMS) have with their neurologist can hugely influence how both parties feel about the standard of care being provided, and a disconnect in priorities could lead to ongoing dissatisfaction.

MS in the 21st Century is a steering group consisting of both healthcare professionals (HCPs) and patients, and is therefore able to offer unique insight into the relationship between the two groups. Through a series of workshops in 2016, the steering group identified that patients and HCPs appeared to have considerably different views on ‘what patients want’ and what the unmet needs in MS care are. As a result, they set out to validate their findings through a survey, which has now collected over 270 responses on the topic of perceived unmet needs in MS care, with interesting results:

In alignment with MS in the 21st Century’s findings, a large proportion of PwMS reported that an important barrier to communication was doctors misunderstanding patient priorities. HCPs felt that the greatest barrier to effective communication with patients was accurately explaining and helping them to understand complicated information, and while PwMS also expressed difficulty in understanding complex disease information, they felt that a lack of time with doctors was a much bigger issue.

Along with lack of time during interactions, the communication challenges most frequently reported by PwMS were finding emotional support, understanding their treatment options, and lack of good quality patient materials; a large majority of PwMS indicated that they would benefit from more resources, both printed and online, to help explain their disease.

In addition to the above, nearly one in four PwMS reported that they had not discussed disease progression with their doctors, and while 13.6% of HCPs attributed this to patients preferring to avoid the topic of disease progression, only 6.5% of PwMS agreed that this was the case.

So how has it come to be that the relationship between the MS patient and their healthcare team has become so misaligned? And how can we bridge the communication gap?

To find out more about this data, or to view the newly created communication tools 'MyMS priorities' and 'MyMS commitments', go to our MS21 resources page.


World Brain Day 2018 – are patients well-informed about environmental factors?

This year, World Brain Day is commemorated on 22 July, and is adopting the theme of how the environment can impact brain health.  Whilst the brain is a part of the body essential for the personal, professional and social development of people, it also fundamental in the many diseases. So, what role does the environment play in a neurological disorder such as Multiple Sclerosis (MS)?

Exposure to sunlight, vitamin D, salt intake and smoking are just some of the environmental factors that could impact the life of a person with MS.

Studies have shown that people with MS who smoke cigarettes are three times more likely to enter a secondary progressive phase than people with MS who don’t smoke cigarettes. An increase in body temperature, whether due to ambient heat such as being outdoors in the summer or exercise, or due to internal factors such as an infection, can also worsen MS symptoms. This phenomenon is called a pseudo-relapse or pseudo-exacerbation, as it can resemble a relapse but is not due to myelin or nerve damage. One symptom that tends to be of particular concern to people with MS is cognitive function, which can be affected during these environmentally triggered pseudo-relapses.

Interestingly, in my experience, cognitive deterioration is one of the symptoms of MS that is often least talked about, both in the consultation and in specific forums as it can often be difficult to talk about; however, this generates a growing demand from both patients and associations to know more about this symptom, as well as to have the tools to face it. This is the focus of the MyMS Commitments and MyMS Priorities tools developed by the MS in the 21st Century Steering Group.

MyMS Commitments is intended to outline the ways in which patients and healthcare professionals can share the responsibility of disease management, including providing reliable information sources.  In addition, the group’s second tool, MyMS Priorities, helps patients to identify and present their highest priority concerns or questions. MyMS Priorities helps patients to find a way to organize the consultation with their specialist, order ideas and ensure doubts about their illness in general or any particular symptom are addressed.

By introducing tools such as these, we hope that we can induce a change in behaviours; we must continue work together, neurologists and patients, to increase knowledge of MS symptoms, to better understand the illness and how healthcare professionals can help us improve our day to day lives.  

Maria Paz Giambastiani

Supported by Prof Sarah A Morrow


ECTRIMS 2017 – perspective from patient advocate, Birgit Bauer


ECTRIMS (The European Committee for Treatment and Research in Multiple Sclerosis) is one of the most interesting congresses about MS I have ever visited.

The event is held annually, and this year, the world‘s largest congress about MS took place in Paris from 25th to 28th of October and more than 10,000 visitors from more than 99 countries attended. In addition to a big exhibition from the pharmaceutical industry and some patient organisations, every day was filled with poster sessions, symposia organised or sponsored by the pharmaceutical industry and scientific teaching courses.

There is a lot to learn about Multiple Sclerosis; talks were given about diet, sports, mental health and isolation, and economic problems of patients, but for me, it was most interesting to find out that 'problems of daily life' have become such a large focus.  It seems to me that views have finally changed, and that many healthcare professionals now recognise that it is not only the treatment that affects a patient’s wellbeing - it is important to see the 'bigger picture'.  

One of the most important issues in my mind, and a focus of the MS in the 21st Century steering group, is communication between doctors and patients. Time with neurologists is often limited, the language used can be scientific and difficult to understand, and not every patient is well prepared for their appointment.

The MS in the 21st Century group, chaired by Prof. Dr. Peter Rieckmann, is composed of a patient steering group and a healthcare professional steering group. At ECTRIMS, representatives from each group formed a panel for the workshop 'Two Monologues do not make a Dialogue' and presented the two new communication tools which have been created by the group.  

[Stanca Potra (Romania) and I represented the patient group, and Prof. Dr. Peter Rieckmann (Germany) and Prof. Dawn Langdon (UK) represented the healthcare professional side. The workshop was attended by  over 50 healthcare professionals, patient representatives and industry members.]

The first tool, 'MyMS Priorities', can help patients to keep an overview of their symptoms and to identify their most important questions for the next appointment with their neurologist. It also allows healthcare professionals to list their priorities for any consultation and can help with tracking changes over time. The workshop emphasised that understanding each other and effectively exchanging information is hugely important.

A second important question posed by the panel was, 'who is responsible for a patient’s care?' Is the doctor 100% responsible or must the responsibility be shared by patients and doctors?

 'MyMS Commitments' helps patients to become more engaged in their healthcare and to take some of the responsibility for management of their MS.

From a patient perspective, my view is that tools like this are needed, but it is important that they are tailored for different countries' needs. I believe that discussion between patients and doctors has a positive impact on the life of the patient and the more informed both patient and doctor are of each others' needs, the better the patient’s care will be.


Birgit Bauer, MS Patient since 2005, Patient Advocate and Member of the MS in the 21st Century Patient Steering Group.