2023-12-03 11:30:53
by Livia Gamondi
the name of the campaign launched to raise awareness of this rare and complex disease that affects the connective tissue, for which the treatment path is not homogeneous across the national territory
White hands that become red and even blue: Raynaud's phenomenon, which can sometimes be the alarm bell for scleroderma, a rare and complex disease that affects the connective tissue. There are around 30 thousand Italians, mainly women, who have received the diagnosis. The pathology involves the skin, vascular system, blood vessels, heart, lungs, digestive and musculoskeletal systems. Information and training are essential to understand and recognize the disease and diagnose it early. Scleroderma is also ours, the awareness campaign presented in recent days in Milan and promoted by Gils, the Italian Group for the Fight against Scleroderma, LISS, the Italian Systemic Sclerosis League and Amrem, the Emilia-Romagna Rheumatic Patients Association with the unconditional contribution of Italfarmaco. All information is available on the site www.sclerodermia.info.
The objective is to turn the spotlight on systemic sclerosis and provide accurate information on the pathology, on the treatment path, which is not yet standardized and homogeneous in all regions, and on the testimonies of specialists and those who experience the disease. Like Elisabetta who has been going to the hospital in Trapani for 12 years to have long drug infusion sessions. It means staying still for hours – she explains – If there was the possibility of doing the therapy at home it would be a great help, but in my Region this possibility has not yet been foreseen. And then Beba who took six years to reach the diagnosis. she has been treated since 2015 in a Roman hospital where she periodically has her week of infusions. I'm lucky because I live near the hospital and I can go back and forth for those 6-7 hours of infusion. But together with me – he explains – there are many people who every day have to travel up to two and a half hours by car, there and back, to be able to come for therapy.
Today, treatment paths include management at hospital level and the use of fixed or wearable devices. But in the future there could be better management, with the use of telemedicine and telemonitoring, hospital-territory integration. The lack of specialists, hospital staff and beds, and organizational differences are the reasons why Italy is fragmented into many different realities. Systemic sclerosis is a rare progressive disease, an early diagnosis allows it to be managed better even if it has progressed and has caused damage to other organs thanks to the availability of numerous effective drugs that can be used alone or in combination – explains Marco Matucci-Cerinic, full professor of Rheumatology at the Vita-Salute San Raffaele University—. It is essential to raise awareness in the medical sector and the National Health Service of how important early diagnosis and treatment is for the quality of life of people who thus continue to be independent also from an economic point of view.
Great progress has been made, however, the diagnostic-therapeutic path still presents great disparities across the territory. Therapy has changed in recent years – says Antonino Mazzone, director of the Medical Area Department, Asst Ovest Milanese -. Advances now allow us to use a wearable device and a sensor to control parameters remotely, and therefore the patient can move. And where the requirements allow it, home care, but not available in all Regions. This new therapeutic path involves more comfortable management that adapts to the needs of patients, a true model of integration between the hospital and the territory favored by technology, which opens a new era in the fight against scleroderma.
The Scleroderma center was established in Lombardy in 2015 and the specialists are part of the ScleroNet network, meeting once a month to discuss the most difficult cases and address clinical problems together. Patients are administered an infusion therapy that lasts approximately 6 – 8 hours, any side effects are known and are adequately controlled by adjusting the therapy. In our center patients are managed with the help of wearable devices in the presence of a nurse or doctor – declares Massimo Reta, Director of SC Internal Medicine for Rheumatology, Maggiore Pizzardi Hospital in Bologna -. In addition to the hospital hubs, there are 16 local offices, in some of which experiments have begun on the relocation of patients by reducing travel times. An option that has allowed us to increase adherence to therapy.
Patient safety is the most important thing: only those monitored for years can be taken care of outside the hospital, as the therapy is well identified and they demonstrate good treatment adherence. Delocalized management represents an opportunity to improve the quality of life, but at present home placement cannot be applied to everyone and in any case it is necessary to start a care path that includes taking charge thanks to the help of family nurses or in community homes, because infusion therapy requires the supervision of a healthcare professional – specifies Oscar Massimiliano Epis, Director of the Complex Rheumatology Structure – Asst Grande Niguarda Metropolitan Hospital in Milan. Today, thanks to telemedicine and hospital-territory integration, it is possible to offer home care programs. There is obviously no better place than your own home. points out Sergio Pillon, vice president of the Italian Association of Digital Health and Telemedicine (Aisdet) —. The concept of home as the first place of care must become a reality thanks to telemedicine. In fact, it represents a great opportunity, so much so that even the AIFA (Italian Medicines Agency) has recognized its value by authorizing domiciliation routes for hospital drugs, according to the doctor's assessment. All this cannot replace either the doctor-patient relationship or the visit and follow-up that these patients must do in hospital, with all the tests and procedures necessary to control the disease, underlines Antonino Mazzone. The future I see is that all therapies for chronic pathologies should leave the hospital, which must remain to treat acute cases.
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December 3, 2023 (changed December 3, 2023 | 10:30)
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