Genetic tests not only at the time of diagnosis, but throughout the course of the disease. Centers of reference (Hub) around which peripheral centers (Spoke) “revolve” to overcome territorial differences and psychological support for patients. These are the crucial issues to be solved for those suffering from acute myeloid leukemia and on which the HemaNet project, promoted and organized by ISHEO with the participation of FAVO Hematological Neoplasms Group, wants to investigate.
The importance of genetic testing
Almost 19,400 people live in Italy after the diagnosis of acute myeloid leukemia. And, every year, there are an estimated 2,000 new cases of this blood cancer, which originates in the bone marrow and progresses rapidly. Advances in research have made available new targeted therapeutic approaches that represent valuable treatment opportunities for patients affected by particularly aggressive neoplastic forms such as acute myeloid leukemia. Mutations in the FLT3 gene are among the most common at the basis of acute myeloid leukemia, because they are found in about 30% of cases. “The test to identify them – he explains Luca Arcaini, full professor of Hematology, University Director of the Complex Operative Unit of Hematology of the IRCCS Polyclinic San Matteo Foundation in Pavia – has an important clinical significance because these patients have a worse prognosis, with an increased incidence of relapse. FLT3 represents a molecular target for which targeted drugs are already present, and under development, which allow to obtain better results in terms of efficacy. Testing for FLT3 should be performed not only at the onset of the disease, but also at recurrence. “
Regional Differences and the Test Enhancement Fund
In addition to the greater diffusion of genetic tests, the other crucial points concern the whole path of integrated treatments. Furthermore, to ensure the best patient care, it is important that the Centers are adequately equipped and equipped with the necessary technologies. However, there is a great discrepancy between the Regions and at a territorial level, because not all the Centers have the possibility to carry out the required diagnostic and molecular tests. “It is the reason why – says the senator Maria Domenica Castellone, member of the 12th Permanent Commission (Hygiene and Health) of the Senate – the Refreshments Decree of 24 December 2020 established a fund of 5 million euros for the enhancement of Next Generation Sequencing tests to allow the improvement of the effectiveness of treatment interventions and related procedures, also in the light of developments and advances in applied scientific research with specific regard to the prevention and therapy of molecular alterations that cause tumors “.
Centralize care
Experts believe it is necessary to centralize the management of the disease. “It is important to entrust the management of patients with acute myeloid leukemia to the Hub centers – he explains Gianluca Gaidano, full professor of Hematology, Director of the Hematology Division, Department of Translational Medicine University of Eastern Piedmont, Novara -, defining a model of close collaboration and co-management with the Spoke centers present in the area to ensure continuity of care for the patient “. It is also necessary to strengthen the Hub & Spoke model to allow the Hub centers to welcome all patients who need them and at the same time “educate” the Spoke centers to manage some aspects of the therapy to be carried out locally.
Psychological support
Another fundamental aspect concerns the care of the patient’s psychological sphere, increasingly an integral and indispensable part of the therapeutic path, but unfortunately very fragmented. In some Centers there is a structured clinical psychology service and a dedicated psycho-oncologist, while in other structures this aspect is delegated to the Patient Associations who are unable to satisfy the request, given its size. “The anxiety factor strongly emerged from investigations conducted by Favo about the path of care of patients, while in another survey relating to well-being – he says Davide Petruzzelli, coordinator of FAVO Hematological Neoplasms and president of ‘The Aladdin’s Lamp’ Onlus – 64% of the interviewees declared that they had not received any offer of psychological assistance, and those who had benefited from it declared that they had benefited greatly “.
Valuing the role of psychologists and caregivers
The oncohematological diagnosis represents an extremely stressful event for the patient and caregiver and is often followed by a period of emotional instability, characterized by an increase in anxiety, depression and a decrease in daily activities. The presence of the psychologist in the care team alongside the patient and family members is therefore essential, as stated by the same clinicians who during the pandemic had to deal even more with the communicative aspect towards patients who, never as in this historical period , they had to face the disease in complete solitude. This is why it is important to establish a dialogue with the institutions which, as the senator explains Paola Boldrini, vice-president of the 12th Permanent Commission (Hygiene and Health) of the Senate, “are working to enhance the figure of the psychologist, also taking into consideration the sensitivities of professionals and caregivers”.
The HemaNet project
Patient care, molecular diagnosis, integrated care pathways and psychological assistance are the issues on which the HemaNet project, promoted and organized by ISHEO with the participation of FAVO Hematological Neoplasms Group and with the unconditional contribution, intends to investigate. by Astellas Pharma. The first Expert Meeting of the Hemanet project took place recently, with the aim of disseminating a questionnaire to all hematology centers in Italy, the results of which will make it possible to take a picture of the current management of oncohematological patients and to identify the main obstacles. to define a path for improvement.
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