Multidisciplinary collaboration, rapid intervention and structuring of integrated treatments in Italian hematology centers. By intervening on these three points, the management of the patient with Acute Myeloid Leukemia can be improved. This is what is established by a Vademecum developed within the HEMA NET project, created by ISHEO in collaboration with FAVO Hematological Neoplasms Group. The new document is presented today to the Ministry of Health and the entire project is carried out with the non-conditioning contribution of Astellas Pharma SpA The Vademecum was created at the end of a year-long work that involved haematologist specialists, health managers and other figures professional. It is addressed to the departments of hematology and oncology, to the general and administrative directorates, but also to patient associations, at national and regional level, as well as voluntary associations linked to individual centers.
Genetic haematological tests
Acute Myeloid Leukemia is a blood cancer with a particularly poor prognosis and which often recurs. For these patients, new target drugs are now available which, however, require a mutational characterization of tumors for their use. As he stated Giovanni Martinelli, Scientific Director of the Romagna Scientific Institute for the Study of Tumors “Dino Amadori” – IRST, Meldola -. “NGS haematological genetic tests, in particular FLT3 genetic alterations, pave the way for personalized treatment with selective inhibitors which, if well used, give exceptional and lasting chances of cure in acute leukemia of both relapsed and frail patients.” It is therefore essential to implement an adequate follow-up to allow the timely identification of relapsing forms. To do this, it is necessary to take advantage of all the tools useful to minimize the phenomenon of dispersion, while maximizing the retention in care of patients. Integrated care, and in particular psychological support, can help improve the patient’s quality of life and increase the readiness for intervention.
Subtle onset and the risk of recurrence
“Acute myeloid leukemia has a sneaky onset in most cases,” he argued Felicetto Ferrara, Director of the Department of Onco-Hematology of the AORN “A. Cardarelli ”of Naples. For this reason, in many cases the patient passes in a short time from a state of complete well-being to a condition of serious impairment of the state of health. The emotional impact of a sudden diagnosis of AML is devastating for the patient and family. The most common reaction is a sense of deep anguish, despair and worry, which subside upon achieving complete remission and, even more so, upon discontinuation of therapy. However, even after the completion of the therapeutic program, which often includes allogeneic transplantation, occurs in patients in remission, the uncertainty due to the possibility that the disease may recur. In our experience, the fear of relapse is palpable during periodic check-ups, triggered as a specific response to the experience of a cancer diagnosis and by the need to re-face treatments, including invasive ones. One of the most frequently asked questions, in fact, concerns the possibility of new, less aggressive and more tolerable therapies. These elements strongly underline the need to provide patients with AML with structured and ongoing psychological support over time “.
The Vademecum
The Vademecum of the HEMA NET project was also built by integrating the results of a Survey administered to hematology centers in Italy. “The HEMA NET project – he said Rossella Memoli, Psycho-oncologist at the SANeS Association – proposes a Vademecum with a new model for taking care of patients with AML that contemplates integrated care, and above all psychological support, to help improve the timeliness of diagnosis, especially of relapse, an aspect essential for these patients. To do this, it is essential to structure the psycho-oncologist in the treatment centers. In fact, the HEMA NET survey shows us that today many centers are supported by patient associations, a laudable aspect but not sufficient to deal structurally with the demand for assistance, already complex in itself to provide to patients. The health system must understand the value of psychological support and allocate the right resources to make it structural “. The criticalities of psychological support
The results from the HEMA NET Survey, published in the 14th FAVO Report on the welfare conditions of cancer patients, in fact showed important critical issues regarding psychological support. “In the treatment process, psychological support represents a backbone of taking charge – he explained Davide Petruzzelli, National Coordinator of FAVO Hematological Neoplasms Group -. Fragility, uncertainty – combined with anxiety – are the key words that accompany the lives of patients and caregivers on a daily basis. In this context, the HEMA NET Survey that we conducted highlighted some critical issues on which it is necessary to intervene as soon as possible to ensure a global care for the patient, who starting from the now documented benefits that integrated treatments can offer, at the time it also helps and supports the intervention of clinicians and the care team “.
He patient something
“Monitoring the cancer patient is of fundamental importance not only in the active phase of the disease but also in the follow-up phase, with a view to global and prolonged management over time, which allows for the implementation of all interventions of the type legislation and regulations by the institutions – he argued Elisabetta Iannelli, Secretary General of FAVO and Vice President of AIMAC, the Italian Association of Cancer Patients -. Integrated care and psychological support, in the different phases of the patient journey, are precious and helpful tools for those directly involved and for the health system which, in this way, can continue to monitor the patient over time, reducing the risk of dispersion. These aspects become essential for Acute Myeloid Leukemia, for which the readiness to diagnose any possible relapses is crucial for the prognosis and life expectancy of these patients. “.
Institutional support
The appeal was received by the Hon. Fabiola Bologna, Secretary XII Social Affairs Commission at the Chamber of Deputies. “To ensure an efficient, integrated and uniform system throughout the national territory regarding the care of patients suffering from Acute Myeloid Leukemia, it is necessary to guarantee the blood centers specialists and tools for constant monitoring of the path taken by the patient, assistance multidisciplinary for every aspect of the disease and that pays particular attention to psychological support, both for the patient and for the family – underlined the Honorable -. In addition, a hub-and-spoke network is needed to support the personalized and constructed care plan for the patient; home care in addition to an investment of economic resources must guarantee professional skills both in terms of quality and care time. Training is essential for both healthcare professionals and for patients and caregivers in order to guarantee the use of new technologies that are tailored to people and bring ease and benefit to them “.
“With great pride, we have decided to support the HEMA NET project and to stand by the patients by proposing a cultural and organizational change in the treatment of a disease that affects more than 3,000 patients in Italy every year”, he declared. Giuseppe Maduri, CEO of Astellas Pharma SpA “The Vademecum of the HEMA NET network is configured as a great opportunity since with a multi-stakeholder approach, clear areas of intervention have been identified for which public-private synergies must be encouraged. Raising awareness of the possibilities of treatment for AML patients, raising awareness of the importance of testing & retesting strategies for a timely identification of mutations with an unfavorable prognosis such as FLT3 and structuring a psychological service dedicated to cancer and haematological patients are the priorities that emerged. in this project and which are reflected in Astellas’ Patient Centricity Vision ”.