“Periodic visit, multidisciplinary approach and personalized care: this mix is the keystone for the treatment of the patient suffering from haemophilia and congenital bleeding diseases”. This was stated by Christian Carulli, specialist in Orthopedics and Traumatology, Orthopedic Clinic of the University of Florence, speaking at the online meeting of the ‘Articoliamo’ tour, the campaign supported by Sobi with the patronage of FedEmo, created to promote the well-being of joints in people with haemophilia, which yesterday made a stop (the fourth) in Cesena.
Objective of the initiative: to take care of joint health and promote its well-being thanks to new services for patients, training opportunities with the most important haemophilia specialists and a site full of clear and useful information in everyday life. In addition, the possibility of performing joint screening thanks to portable ultrasound scanners that are arriving in many Italian haemophilia centers.
“The periodic visit, however, is not a voucher or a voucher issued and which has an annual expiration – underlined Carulli – On the contrary, it can also be performed every 18 months, it depends on the patient’s history. There is no haematological prophylaxis that is the same for everyone. , nor an equal evaluation for everyone or an ultrasound the same for everyone. There is no physiotherapy protocol that is the same for everyone. Just as there is no orthopedist without an adequately and equally trained physiotherapist. In the management of the disease the undisputed protagonist is the haematologist, but figures such as the specialized nurse are also fundamental, who must in fact have experience to intercept the signals of the disease. Multidisciplinarity can only bring great benefit to the patient “.
Among those who are in charge of the haemophilic patient there is also the figure of the case manager. “I arrived at the Center for Congenital Hemorrhagic Diseases a year ago, in the middle of Covid – Annachiara Ferrini, case manager Centro Mec della Romagna said during the online meeting – where the figure of the case manager, or the person who carries out a work of connection between doctor and patient and between the various figures that revolve around the care setting, there was none. Among my activities, the main ones are: the management of drugs and appointments for check-ups and the definition of safe pathways. they undergo various check-ups during the year, for them I keep the agenda of routine exams, first of all the annual orthopedic visit. Also very important is the physiatric examination, which before Covid was scheduled once a week, on Thursday , and for a year unfortunately it has been fixed as needed. In fact, with the pandemic, too many programming cannot be done “.
The case manager is a figure “that we wanted and supported – recalled Maria Serena Russo, president of the ‘Vincenzo Russo Serdoz’ Association – because we knew how important it would be in the context of a Mec Center. Organizing meetings and appointments is not up to to doctors, but it is the responsibility of the case manager “.
Chiara Basoli, manager of the Mec Center of Romagna, reaffirmed the importance of a multidisciplinary team (orthopedist, haematologist, physiotherapist, physiatrist, case manager, counselor) for the care of the haemophilic patient: “Ours is a center that collects the Romagna basin. The Region had centers gathered at the provincial level, so it started a reorganization of the same, including ours. We technicians and health professionals, with the collaboration of associations and our patients, have preferred to privilege experiences by centralizing all professional figures that revolve around the patient “.
“A multidisciplinary path – added Biasoli – allows specialists to guarantee complete protection of people with haemophilia, so that they can live a normal, free life. It is also important to adopt some preventive measures, such as prophylaxis with therapies that guarantee maximum personalization and protection from micro-bleeding, periodic monitoring of the joint condition and constant and appropriate physical exercise. Good habits which, together, contribute to the achievement of a high quality of life “.
The fourth stage of the ‘Articulate’ tour, although online due to anti-Covid measures, was also an opportunity to present a research carried out between October and November 2020 that involved people with haemophilia. “40% of the interviewees declare that they do not carry out any physical activity, and most of the young people stop because of the pandemic compromising their future – said Francesco Cucuzza of the Scientific Committee ‘Articoliamo’ and advisor of FedEmo 2018-2020 – while the 43% of respondents have never had an ultrasound screening to date. ”
Yet “the ultrasound we do is used to understand if there is bleeding or not – explained Tiziano Martini, medical director of Usl Romagna, Uo Transfusion Medicine of the Bufalini Hospital, Center for Congenital Hemorrhagic Diseases of Romagna – or if any early alterations are present, not asymptomatic in cartilage, especially in children. Joint screening is very important in the management of the disease. Ultrasound is a low-cost method – highlighted Martini – not at all invasive, practically almost the only radiological examination that can be done at risk zero and which has a high degree of accuracy. The ultrasound method in the treatment of haemophilia, and in general in congenital hemorrhagic diseases, is integrated to study arthropathy, that is joint damage, that malfunction of the joints that our patients unfortunately know well, because it is able to identify the earliest signs of the disease and that when they are present they are already at one s advance stage. In the Mec Center we are holding a training course on the use of the ultrasound method, had it not been for Covid we would have already completed it “.