an aggressive tumor (the same one diagnosed in Mihajlovic) and very hard initial impact. Multidisciplinary management, home care and psychological support are the main needs for a better quality of life
Acute myeloid leukemia cancer of the blood which it affects around 3,500 people in Italy every year, which originates in stem cells present in the bone marrow and develops very rapidly. the same tumor diagnosed in the often aggressive former footballer Sinisa Mihajlovic, for which fortunately the progress of scientific research has recently made available new treatments capable of extend the survival of the sick. But how do the Italian patients who suffer from this neoplasm live? And their family members? Are they almost their greatest needs? To these and other questions he tried to answer there” survey promoted by the Italian Association against leukemia, lymphomas and myeloma (Ail)made by Doxa Pharma.
Aggressive pathology
Every year about 32 thousand Italians fall ill with a blood cancer, which in two thirds of cases affects people over 65. The diagnosis of acute myeloid leukemia comes early, usually within two weeks of the patient’s first visit to the treatment center and accompanied by emotions such as fear, despair, anger, worry. The discovery of an aggressive disease such as this creates anguish and concern in the people who are affected by it and has a very important impact on the family and the caregiver. Sergio Amadori, Full Professor of Hematology and Ail National Councilor -. Today the national scenario of good quality care (survival in Italy for many types of cancer higher than the European average). The moment the patient begins to have symptoms that lead to suspicion of a blood disease, he is sent to a hematology center which takes care of facing the diagnostic and therapeutic path until the possible recovery or follow-up. This is for only one aspect of the management of these complex patients, in which the role of family members, caregivers, volunteers and local services becomes equally important. Of course they exist alcune criticit. For example, the facilities are not always perfectly organized to be able to follow the entire patient care process. And this is a fundamental point because the diagnosis must be made as quickly as possible.For the Acute Myeloid Leukemia project. A journey to do together (carried out with the non-conditioning support of AbbVie), patients, caregivers, haematologists and Ail volunteers answered an online questionnaire validated by a scientific board composed of haematologists to focus on the sick path and its quality of lifethe management of the pathology by clinicians, the needs and requests of all the figures involved.
How it starts: the symptoms
The symptoms of many blood cancers are mostly vague
not very specific and common to many disorders, even not very serious: for example, fever or fever (especially afternoon or night), a sense of weakness that lasts, dolori all of usao to joints that do not regress. Thus, one in four patients declare that they did not immediately go to the doctor due to the difficulty in understanding the gravity of the situation, also due to symptoms that initially seem bearable. Almost 60% first turn to the family doctor before being referred by the hematologist. In any case, within two weeks of the onset of symptoms, 80% of patients are treated. In the vast majority of cases (88%) the hematologist personally communicates the diagnosis to the patient and considers the support that can reach the sick from Ail to be very important. The results of this survey comfort us in the choice of collaborating with haematologists, general practitioners and those who work in the area – he says Giuseppe Toro, national president of Ail -. And we will continue with our fundraising campaigns to support scientific research and guarantee our patients increasingly innovative and effective therapies that can improve their quality of life more and more.
The different subtypes
The number of diagnoses of blood cancer is destined to increase together with the general aging of the population, but the percentages of healings and of people who live with the cancer for a long time (even several years) are also growing. Of course a lot depends on the teahypo haematological disease in question: there are dozens of different subtypesthose belonging to three large macro-groups: leukemia, lymphoma and myeloma, which can occur in acute (more severe and aggressive) or chronic form. Under the name of acute myeloid leukemia we recognize many diseases that over the years we have learned to identify thanks to genetics and molecular biology – he explains Alessandro Rambaldi, professor of Hematology, Department of Oncology and Hematology, University of Milan and Papa Giovanni XXIII Territorial Social and Health Authority of Bergamo -: for this reason, patients are referred to centers or organizational networks that guarantee each patient the deepest and most complete biological overview of their disease. You cannot take care of haematological patients if you do not have the laboratories available to characterize these diseases. Understanding which form we face is also crucial for the choice of treatment. An initial evaluation of the clinical and haematological data must be followed by an initial evaluation of the function of your bone marrow. This is an emergency diagnosis. Soon after, a whole series of investigations for the immunological and cytogenetic and molecular characterization who can predict evolution, quantify leukemia cells and choose the most suitable therapy.
The new therapies
Despite the considerable progress made in recent years
, available treatments for acute myeloid leukemia are still limited. From the point of view of haematologists, the main need (78% of the answers) is linked precisely to the availability of finnovative armaci. The therapies introduced in recent years are drugs that target specific cellular targets – he says Alessandro Maria Vannucchi, director of Hematology of the Careggi hospital and of the School of Specialization in Hematology of the University of Florence -: this differentiates the new molecules from the chemotherapeutic schemes that have been used so far, which however continue to represent the substantial skeleton of the treatment of this neoplasm. Some of these drugs can be used in conjunction with conventional therapy, others can be used in particular patient groups, for example moles so-called “unfit” that is in subjects who do not have the characteristics to be able to tolerate conventional chemotherapy; still others for patients who have lost response to the first treatment or to maintain a response after stem cell transplantation. This series of new molecules is changing the current therapeutic landscape of cancer, ensuring significant improvements in survival or no relapse of the disease, but none of these alone can lead to recovery.
Because you need a team made up of more experts
The survey shows that in the majority of cases (80%) Italian patients are followed by a multidisciplinary team: hematologist, nurse, psychologist and nutritionist are the most active figures on the patient today. About 70% of patients, caregivers and volunteers rate the multidisciplinary team as an extremely important element, but the inclusion of an infectious disease specialist and a palliative doctor is also desirable, for assistance that is as complete as possible. The presence of several specialists is important because it is a complex patient who in the course of the disease can present various complications and has very specific needs, starting with nutrition and psychological support – underlines Fabio Efficace, Head of Quality of Life Studies at the GIMEMA Foundation -. It is necessary to act in complete synergy and with well-organized coordination: literature data confirm that the multidisciplinary team even has positive repercussions on survival and on the patient’s better quality of life. There communication also a crucial aspect as well as the speed with which laboratory data are shared, the patient’s clinical condition and how they accept and cope with the disease.
How to improve the quality of life
However, patients, caregivers, haematologists and volunteers believe that the level of quality of life of patients with acute myeloid leukemia is not high. There management of the emotional-psychological aspect what, according to haematologists, patients and volunteers, has the greatest impact on the well-being of patients. Even the caregiver clearly pays the consequences, in particular for the commitment that the patient needs and for the emotional burden that he has to face. How to improve? According to the respondents, the most appreciated proposal concerns services of House assistance that they are able to give continuity to the hospital management of the patient, which must certainly be accompanied by psychological support to help the sick and family members in the daily management of the disease and its impact on the lives of the people concerned.
April 28, 2022 (change April 28, 2022 | 20:40)
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