In Sardinia there is the largest number of cases of Multiple Sclerosis in Italy. According to the data reported in the “Barometer of Multiple Sclerosis and Related Pathologies 2022” created by the Italian Multiple Sclerosis Association (AISM), it is estimated that every year in Italy there are over 3,600 new cases: 6 new cases per year every 100,000 people, 12 in Sardinia where the incidence is therefore double the national average. Also for this reason, the funding included in the 2021 Omnibus regional law dedicated to the Multiple Sclerosis Center of the University Hospital (AOU) of Sassari represents an important signal for sick people in Northern Sardinia and for the revitalization of the network of regional centers. The loan will give the opportunity, in the coming months, to significantly enhance the assistance activity already present, especially in terms of dedicated human resources. After the pandemic, here too we are working day after day to restore the rhythm of treatment most suited to the needs of patients. And it is precisely with this in mind that the Multiple Sclerosis Center of Sassari has also joined the StayHome project, developed by Biogen in collaboration with AISM, aiming to facilitate, but also to limit as much as possible, the movements that in this region can often be difficult.
Reduce travel
As also happened in the other nine Centers participating in the project, we started with the identification of the possible areas of intervention: “At our Operating Unit – explain Prof. Paolo Solla and Dr. Roberto Zarbo, respectively Director and Neurologist of the Complex Structure of Clinica Neurologica, AOU of Sassari – home management, in the pandemic period, was essentially characterized by telephone contacts and sporadic use of software for remote interviews. The intervention plan will cover various critical issues identified, especially with a view to reducing unnecessary travel for patients and caregivers “.
The areas of intervention
Once the analysis of the situation was completed, project indicators for execution and realistic objectives were proposed to be pursued in the coming months. “We have just identified some areas of intervention, which are the possibility of scheduling as many assessments / follow-ups as possible directly at our expense, therefore not sending the patient to look for visits / examinations, but taking care of the path with different therapies ”, Solla and Zarbo explain. At a later stage, the aim is also to implement telemedicine which, however, first requires a greater diffusion of digital technologies, not only in the health sector, but also by people with multiple sclerosis and their families. In this context, the attention and commitment of AISM is also moving, which is active in the area and represents a point of reference for those living with multiple sclerosis, an important observatory for identifying the limits and concrete difficulties related to effective use by people of telemedicine tools.
Reduce travel
The next step of the project will be the operational part to concretely improve patient care, starting with the reduction of movements. “Currently – explain Solla and Zarbo – the activity that is constantly managed without requiring the presence of the patient is related to the prescriptive aspect, understood as programmed instrumental / blood chemistry tests and renewal of therapeutic plans”. In the future, the aim is to do much more: “If the patient has to have three specialist visits – exemplifies Zarbo – he currently does them at three different times and in three different places. Although it will probably still be necessary to go to different places, our intention is to have them all in one care package, including blood tests, so the caregiver only has to move once and everything is done in a single day. “.
The application of telemedicine
It takes longer to implement telemedicine. “We need dedicated tools, which were largely developed during the pandemic,” explains Zarbo. “There is a piece of infrastructure that needs to be created to allow certain types of sharing with the patient. The services that could be carried out with the support of new digital technologies are many: from home delivery of the drug when needed, to most of the visits made in a virtual way, to programming everything remotely to let the patient come once alone in the hospital for a care package that allows him to follow the therapeutic and follow-up path, moving as little as possible “. Solla also agrees on the necessary implementation of telemedicine, expressing some further considerations in this regard: “Implementation is not only a question of the availability of technological resources, but also the need for a reorganization from a regulatory point of view, such as in the appropriate classification of each visit mode “.
How to frame a remote visit
The question concerns, in fact, how a visit in telemedicine should be framed from the bureaucratic point of view: “It is a medical service and as such it must also be framed from a medico-legal point of view. These aspects require a codified management through rigorous guidelines, which allow us to carry out telemedicine projects, which in my opinion are now essential and fundamental ”, continues Solla.
Patients with mobility problems and young people
Our thoughts go to young people diagnosed with Multiple Sclerosis: “It is important – reiterates Zarbo – to take into consideration that there is not only the patient with Multiple Sclerosis who has mobility problems, but there are also 40-year-old patients who continue to have a full and active social life. It is important to commit ourselves to respond to their needs, for example by avoiding the need for constant travel which involves lost days and inconvenience for caregivers as well ”. And Solla adds: “It is precisely the basis of the project that of understanding the needs to improve the patient’s condition at home, avoiding affecting costs. Make sure that the patient is not conditioned by leaving home for assistance and that he has the possibility to manage his time in the best possible way “. Also in this perspective, the activity of constant listening to the needs and expectations of those living with MS carried out by AISM can be an important starting point to highlight possible areas of action.
Making up for lost time
As in most of the health facilities, also in Sassari the urgency is to recover the reduced assistance services and services due to the pandemic. “We are in a complicated condition for MS, but not only, also for other neurological diseases because many things have jumped for a series of reasons related to Covid-19”, explains Zarbo who adds: “The StayHome project has come at the right time and it had a big impact, because being able to carry out an accurate analysis has brought out different points of possible intervention ”.
Integration with the territory
Most of the needs to be met require a strong integration with the territory as also desired by the NRP. “The need to prepare, from an organizational point of view, the patient’s path in anticipation of ministerial indications regarding hospital-territory integration and the extended use of telemedicine has emerged clearly”, says Solla. “The goal is to fully exploit the opportunity of the NRR and the hospital-territory integration to structure in an innovative way a service that at this moment needs a significant remodeling”.
A path to be adapted
From theory to practice, the step is not short and some critical issues could make the path more difficult. “It won’t be easy at all,” Zarbo clarifies. “From the internal point of view, it will be easier to manage the processes because we will have staff dedicated to the disease, but as regards the interaction with the outside world, whether they are specialists in individual branches in a multidisciplinary perspective or whether they are centers for the magnetic resonance, a different job will be necessary: all processes that take time and that must be done in the right sequence ”.
In addition to Professor Paolo Solla and Doctor Roberto Zarbo, the staff members of the Complex Structure of the AOU Neurological Clinic of Sassari who participate in the StayHome project are: neurologists Gianfranco Mameli, Stefania Leoni, Gabriele Farina and Elia Sechi, the Nursing Coordinator Anna Bellu , the nurses Caterina Scodino, Piera Derudas, Michela Pinna, Giuseppina Mogni and Maria Pintus.