VIDEO | Health. SM, “Empowerment and inclusiveness” the watchwords of Rims 2024

The annual meeting of the European Rims network is in Hasselt, Belgium. President Giampaolo Brichetto: "Patients are increasingly protagonists, their participation is strategic"

ROME – ‘Empowerment & Inclusivity’. This was the underlying theme of the latest edition of the annual congress of the European network Rims (Rehabilitation in Multiple Sclerosis) which took place in Hasselt, Belgium, >from 27 to 29 June. Three days in which international experts discussed new solutions and programs that can improve the rehabilitation practices of people with Multiple Sclerosis.

“ENGAGEMENT AND INCLUSIVITY OF PATIENTS MS IN TREATMENT AND RESEARCH PROCESSES”

Three days in which the patients were the protagonists, because “the participation of people with MS is the strategy both to increase knowledge of the disease and to improve strategies for dealing with it”, explains to Dire Giampaolo Brichetto , president of Rims, medical director of the Aism Liguria Rehabilitation Service and coordinator of research on the rehabilitation ofAism with its Foundation “Engagement and inclusion of people with Sclerosis The themes around which the Rims congress developed were multiple within the processes of care and research, declining these themes in all sessions”, explained Brichetto.

THE POSSIBLE DEVELOPMENTS WITH DIGITAL INTEGRATION

A reflection that began with the honorary reading by Professor Christoph Heesen, neurologist of theUniversity of Hamburg, “which focused on how the empowerment of people with Multiple Sclerosis in the treatment processes can be facilitated by the transition that has taken place from traditional medicine to digital medicine – President Rims further explained – Digital technology has offered the possibility of interacting more effectively with healthcare professionals so much so that at the end of his speech, Professor Heesen went so far as to hypothesize how, in the future, from the perspective of digital integration, the centers that deal with all-round MS may not necessarily need to have the different professionals actually present on site. Interaction, even virtual, could facilitate organisation, reduce costs and make it possible to reach all those people who are not near a central hub”.

EFFECTIVE DIGITAL SOLUTIONS FOR REHABILITATION

“Another session of the congress then highlighted, in particular, how there is still a lot to do in the world of rehabilitation research – Brichetto said again – especially from a methodological point of view. Rehabilitation, in fact, acts on multiple levels and has biological, behavioral, etc. effects. Therefore designing trials, i.e. rehabilitation experiments, becomes very complex”.
Another aspect addressed during the congress was the value “of all those tools that exist online to provideeducational, psychological and mindfulness support to patients with SM – explains Brichetto – the literature already demonstrates how these digital solutions can be effective. But if on the one hand the most promising and effective digital solutions are those that provide psychological support to the person, on the other there is still a long way to go as regards telerehabilitation, i.e. online support to the patient for the motor aspects. But this – reflects Brichetto – is probably due to the fact that for rehabilitation it may be necessary to have particular devices at home compared to the simple video interface which is sufficient for psychological support”.

THE SURVEY PRESENTED

Two surveys were then presented in the last session of the congress. “The first – explains Brichetto – was the one launched by the European Multiple Sclerosis Platform in which patients were asked what the response was from a health point of view with respect to their symptoms (for example fatigue, movement disorder etc.). This has made it possible to outline a scenario analysis of rehabilitation in Europe which is still very fragmented, in Belgium and Italy for example the access to rehabilitation and the type of rehabilitation provided is of high quality and multidisciplinary, while there are other countries which is not the case. This data is important because it will allow us to act at an advocacy level in the European Community to arrive at a homogeneous and quality situation in all countries”.
The second survey presented was also inspired by the patients’ experiences, the one which is was conducted within the Proms initiative, which involved over 5 thousand people with MS around the world to investigate their experience of the disease and how their symptoms impact their lives, how they vary with age and with the course of the pathology, with an ad hoc questionnaire constructed directly by people with MS for people with MS.
“What came out – explains Brichetto – is that, on average, up to the age of 50, aspects of the disease considered most important by patients are those associated with anxiety, stress, emotional disorders and finally motor disorders. A somewhat surprising result – reflects President Rims – With increasing age, particularly after the age of 50, there is a reversal, and mobility disorders become the first in importance, according to patients. In second place are cognitive disorders and only in last place are anxiety and depression. This – says Brichetto – is probably because anxiety and depression have the upper hand in the first years in which one has to take charge of the disease. This survey is important because it gives us the opportunity to understand not only how to better deal with the disease but also how to better design rehabilitation trials, focusing more on the domains depending on the age of the patients”.

THE NEWS: ONE BOARD OF PEOPLE WITH MS FOR RIMS SUPPORT

Finally, the great novelty of this year’s congress was the establishment of a board of people with MS, with representatives from the various associations belonging to the European network: “We want to focus on We engage people with MS for the organizational and strategic support of Rims and we do this because we are convinced that participation in the governance of our network will allow us to improve the research and treatment processes. It is a topic that is very dear to us at Aism. and which we are now relaunching more forcefully at a European level – explains Brichetto – people will be identified in the various European associations, they will form a virtual board and together with the governance they will decide the themes of the congress, what should be done in the research activity, etc.”. Another way to recognize patients’ key role.
With this wealth of innovation and eyes focused on the future,the next Rims congress will be held in Barcelona in September 2025, and will be organized together with Ectrims (European Committee for treatment and research in multiple sclerosis).