2023-11-30 13:11:09
Turn the spotlight on systemic sclerosis to provide patients with accurate information on the pathology, on the different treatment paths, which are not yet standardized and homogeneous in all regions, thanks to the testimonies of specialists and those who experience the disease. With these objectives starts the new campaign ‘Scleroderma is also ours’ (sclerodermia.info) promoted by Gils – Italian group for the fight against scleroderma, Liss – Italian League of systemic sclerosis and Amrer – Association of rheumatic patients Emilia Romagna, with the contribution not conditioned by Italfarmaco.
Systemic sclerosis (or scleroderma) – recalls a note – is a rare complex disease which in Italy affects almost 30 thousand people, mainly women. It occurs between the ages of 40 and 50. Its most serious and disabling form can manifest itself between the ages of 20 and 25. It affects connective tissue involving the skin, blood vessels, heart, lungs, kidneys, digestive and musculoskeletal systems. Telemedicine, telemonitoring and hospital-territory integration represent the future of personalized and increasingly home-based care paths.
“Being an active part of this campaign – says Paola Canziani, Gils president – for us means contributing to helping patients who every day, due to the complexity of the disease, find themselves facing motor, pneumological, cardiological and psychological difficulties”. With the campaign it is possible to “clearly bring out – adds Mariabeatrice Elvano, Liss spokesperson – the voice of patients and concretely evaluate the heavy involvement that the disease implies in the daily management of the person and the family unit”. As Daniele Conti, Amrer director, observes, “precise patient care paths that guarantee a rapid diagnostic-therapeutic approach are the fundamental elements for helping people with this condition”.
Currently the treatment paths for systemic sclerosis involve management at a hospital level. “At our center – explains Massimo Reta, director of the complex rheumatological internal medicine structure of the Ospedale Maggiore ‘CA Pizzardi’ in Bologna – patients are managed in the hospital with the aid of wearable devices in the presence of a nurse or of a doctor, so that they can intervene in case of need. In addition to our hospital hubs, we have 16 local offices available, in some of which we have started experimenting with the relocation of patients in our facility, achieving the objective of allowing patients to go to your district, reducing the travel time from your home to the place of treatment. An option that has allowed us to increase adherence to therapy.”
Patients who, due to physical conditions and/or logistical problems, are unable to reach the reference facility can have home care programs thanks to hospital-territory integration and telemedicine which allows patients to be monitored remotely. “The concept of home as the first place of care thanks to telemedicine must become a reality – underlines Sergio Pillon, vice-president of the Italian Digital Health and Telemedicine Association (Aisdet) – This procedure represents a great opportunity, so much so that even the Medicines Agency ( Aifa) has recognized its value by authorizing domiciliation routes for hospital drugs, according to the doctor’s assessment”.
Currently, patients who have been monitored for years, for whom the therapy has now been well identified and in whom, ultimately, good adherence to the proposed treatment paths can be taken care of outside the hospital. “We are aware that the delocalised management of patients represents a very important opportunity in terms of improving the quality of life – specifies Oscar Massimiliano Epis, director of the Complex Rheumatology Structure of the Asst Grande Niguarda Metropolitan Hospital in Milan – but at present the domiciliation , for example, cannot be applied to everyone and in any case it is necessary to start a care path that involves taking them into care thanks to the help of family nurses or in community homes, as infusion therapy is a therapy that requires of the control of a health worker”.
In this regard, “the progress achieved in recent years – highlights Antonino Mazzone, director of the Medical Area Department of the Asst Ovest Milanese – has allowed us to move from the need for management at the patient’s bedside to the possibility of using a wearable device and a sensor to control the parameters remotely, thus allowing not only greater patient mobility, but also, where the requirements allow, home care. This ‘new’ therapeutic path allows for more comfortable management, a true model of integration between the hospital and the territory, favored by technology. A small but substantial revolution in the approach to the disease, which would allow the patient to be monitored remotely and to have a positive impact on the patient’s quality of life”.
Identifying systemic sclerosis can be complex due to the multiple manifestations of the disease and the different organs it can involve. “Today, thanks to the Vedoss (Very Early Diagnosis of Ssc, i.e. very early diagnosis of systemic sclerosis) and Acr/Eular classification criteria of 2013 – remarks Marco Matucci-Cerinic, full professor of Rheumatology at the Vita-Salute San Raffaele University – we have the possibility of identifying scleroderma in a timely manner even in the earliest stages and starting them on an in-depth path in order to decide on a therapy that quickly leads to a remission” to be monitored over time. “An early diagnosis followed by a timely and appropriate therapeutic plan – he concludes – optimizes the patient’s response, slowing down the evolution of the disease and reducing the possibility of tissue damage at the cardiac, pulmonary, renal and gastrointestinal levels”.
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