With its 1,800 patients suffering from Multiple Sclerosis, Tor Vergata in Rome is one of the six Regional Reference Centers for the diagnosis and treatment of this disease. Led by Prof.ssa Gerola Marfia, Head of the Multiple Sclerosis Unit of the Tor Vergata Polyclinic, the Center participates in the planning control room together with that of the San Camillo Hospital in Rome in the StayHome project, developed by Biogen in collaboration with AISM (Associazione Italian Multiple Sclerosis), which is committed to putting the needs of people with Multiple Sclerosis and their families in the foreground within the StayHome path, in relation to the enhancement of the home care and assistance setting. Also in this case, the urgency that is guiding healthcare professionals is to intercept the stages of the patient journey for which it is possible to better respond to the patient’s needs, also capitalizing on the experience of the pandemic.
Integrated multidisciplinary paths
The poorly predictable clinical course of the disease, its high incidence in young adults with a long life expectancy, combined with the growing complexity of the current therapeutic offer, have profoundly changed the care needs of the patient who receives the diagnosis of Multiple Sclerosis. “A constantly evolving scenario – explains Prof. Marfia, Head of the Multiple Sclerosis Unit of the Tor Vergata Polyclinic – requires the definition of a new concept of taking charge with the design of adequate integrated multidisciplinary paths. The organization of the network of MS Centers in Italy has effectively responded in the past to the need for a highly specialized level of expertise in disease management. However, the benefit of this high specialization has proved to be today substantially linked to access in the presence of the patient at the treatment center and with it to all the activities of counselling with other disciplines “.
More integration between hospital and territory
The pandemic crisis linked to the Sars-Cov-2 infection and the related difficulty in meeting face-to-face at hospitals have highlighted the urgency of implementing telematic treatment paths that are partly substitutive or even better integrated with face-to-face assessments. “Another caveat to be addressed, which emerged overwhelmingly during the months of the pandemic in many areas of healthcare and also in the world of Multiple Sclerosis – adds Marfia – concerns the unsatisfactory integration between hospital clinical centers and territorial medicine”. A theme that intercepts all the stages of the patient journey with a certainly more significant impact in the management of people who develop greater disabilities.
The role of general practitioners
These two issues, namely the hospital-territory integration and the digitalization of care pathways, are strictly interconnected. “The strengthening of the interaction between Centers and the territory, hopefully favored by the digitalization process of healthcare – continues the neurologist from Tor Vergata – represents one of the most demanding challenges in the near future which cannot be separated from a greater involvement of general practitioners and specialists working in local health organizations, in order to provide people with MS and their families with a truly synergistic and complementary care service. The StayHome project, in which my Center participates, offers us the opportunity to carry out a context analysis and identify the areas on which to focus the improvement interventions in compliance with the different regional territorial realities “.
The role of case managers for rehabilitation
There are many assistance services that a person with Multiple Sclerosis can benefit from while remaining at home, but what is considered most important in the various Centers that are participating in the StayHome project is access to rehabilitation services, whose impact on the course of the disease. it has now been widely documented. “These difficulties – underlines Marfia – could be limited by ensuring the presence in the Multiple Sclerosis Centers of intermediate experts in territorial medicine, such as Case managers, who accompany the patient in the rehabilitation process, or facilitate, where necessary, the activation of home rehabilitation programs as well as the use of tele-rehabilitation programs under the supervision of the neurologist and the physiatrist of the clinical center, which could be favored by the adoption of tools such as for example the health telecooperation ”. According to data from the Barometer of Multiple Sclerosis and related diseases 2022, recently presented by AISM, to date only 27.4% of Clinical Centers have an active Case Manager, and of these only in 30.8% of cases it is a Case manager who regularly interfaces with territorial care.
Teleconsultation and telecooperation
Teleconsultation and Telecooperation can find a particularly effective application in the relationships between MS Centers and public and private-affiliated territorial Rehabilitation Structures in which physiatrists and physiotherapists often find themselves having to rehabilitate patients whose clinical history they do not know. “Telecooperation in particular can provide the opportunity for shared management in the field of the rehabilitation path of the individual patient”, explains Marfia who adds: “Teleconsultation can also be useful for making multidisciplinary interaction between specialists effective in view of a optimization of the management and monitoring of the disease and its complications and global management “.
Collaboration between specialists
Precisely on the subject of collaboration between specialists involved in the patient’s care path, for years multidisciplinary internal paths have been activated at the Polyclinic of Tor Vergata that facilitate the access of people with Multiple Sclerosis to specialist visits with colleagues from other disciplines operating within of the Hospital, such as urologists, infectious diseases and physiatrists, through the creation of dedicated agendas. “The goal of the near future – announces Marfia – is to strengthen these collaborations by integrating them with local medicine, outsourcing some processes thanks to the involvement of specialists operating within the Health Homes, and in particular by promoting the active participation of the GP in all stages of the MS patient care path, hopefully through the safe and secure sharing of clinical data “.
The digital surgery
Another challenge that the Tor Vergata Center is facing is the optimization of the number of accesses of the patient and his caregiver thanks to the opportunities offered by digital. “With a view to implementing proximity assistance, while waiting for the therapeutic plan to be shared in telematic format between the clinical center and the local pharmacy – the neurologist said – we have created a digital clinic dedicated to the renewal of expiring therapeutic plans; this service is now particularly appreciated by our clients “.
Telemedicine in ‘family planning’
According to the AISM Barometer 2022, over 90% of the Centers manage and interact with patients via email or messaging services, and just over half of the Centers provide telephone visits and follow-ups. There are less than a third, however, to do televised or psychological support sessions via video call. These are above all services activated to respond to the pandemic, but whose integration into clinical and organizational pathways is still uncertain. Telemedicine, declined in terms of television and teleconsulting, also lends itself particularly to the management of family planning in the course of Multiple Sclerosis, a topic to which the Tor Vergata Center has been paying particular attention for years also due to the higher incidence of the disease in young women of childbearing age. “Digital tools at the service of health – explains Marfia – are proving particularly useful in the planning phase of pregnancy as well as during pregnancy itself, for the management of doubts and fears that accompany this period, as well as for the optimization of the therapeutic path proposed in relation to the maternity project and not least to favor the interaction of the treating neurologist with the gynecologist and the midwife “.
Towards an action plan
The StayHome project has currently concluded the evaluation of the state of the art with the sharing of the results that emerged in the various centers participating in the context analysis. “Areas for improvement were identified and the possible economic impact of the proposed interventions was assessed”, explains Marfia, who specifies: “The project is currently in the phase of defining the most effective indicators to monitor the impact that the management of the patient at home may have in the treatment path and is in the process of defining the action plan to be adopted at each Center. The connection with the territory is certainly the most critical issue. The introduction of digital technology in a stable way in the healthcare reality with the adoption of a multi-channel offer can become an opportunity to improve integration with the territory and to ensure that neurologists who work within clinical centers provide their expertise, even for patients with more advanced disabilities, who today are often no longer followed by the MS Center “. The results that emerged after the six months of implementation at the centers involved in the project will be shared for the definition of best practices that can be an orientation for policy makers with a view to optimizing the available resources.