“It’s been 18 years since my diagnosis. 18 years that I define as a perfect storm, because in the general upheaval I experienced what is good and positive in the assistance path “. This is how she describes that event that upset her existence Emanuela Massa, who discovered when she was 28 that she had acute myeloid leukemia, a form of blood cancer that until a few years earlier would have granted her only a couple of months to live. Now – leukemia and then breast cancer too – she talks about her experience and testifies as a patient and volunteer of the AIL (Italian Association against leukemia, lymphomas and myeloma) the strengths of the complex oncohematological path and needs still unmet. The occasion is the presentation of the survey “Acute Myeloid Leukemia. A journey to do together ”conducted by Doxapharma and promoted by Ail. A survey that involved patients, caregivers, volunteers and hematologists, and from which it emerged how much work can still be done to improve the assistance and quality of life of patients, starting from doctor-patient communication up to the need to implement home care and forms of psychological support.
Acute myeloid leukemia, a still scary diagnosis
Acute myeloid leukemia is, to use a somewhat dated definition, a malignant blood tumor, due to genetic mutations that alter the proliferation of hematopoietic stem cells of the bone marrow and the differentiation of blood cells “, explains Alessandro Rambaldi, Professor of Hematology, Department of Oncology and Hematology, University of Milan and Territorial Social Health Authority Papa Giovanni XXIII of Bergamo. “Patients’ marrow loses the ability to produce red blood cells, white blood cells and platelets, and therefore patients become anemic, very susceptible to infection and bleeding.” It is an aggressive disease that in many (but not all) cases begins with unspecified symptoms. very clear, also attributable to other ailments of lesser severity, but which in a short time become acute to the point that in a couple of weeks over 80% of patients are referred to the haematologist specialist for confirmation of the diagnosis.
A diagnosis that all the actors involved in the investigation confirm to be a very complex moment, also from the point of view of communication. For most patients it is difficult news to accept, which is still very scary due to the aggressiveness of treatments and the scarcity of therapeutic options. A negativity shared by doctors, who however also see the opportunities offered by new molecules that affect specific cellular targets and that can give new perspectives. “Some of these drugs can be used in association with conventional therapy, others can be used in particular groups of patients, for example in the so-called“ unfit ”, ie 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 “, comments Alessandro Maria Vannucchi, Full Professor of Hematology, Director of SODc Hematology of the Careggi Hospital and Director of the School of Specialization in Hematology, University of Florence. “This series of new molecules is changing the current therapeutic landscape of acute myeloid leukemia, ensuring significant improvements in terms of survival and / or the absence of disease recurrence, even if none of these alone can lead to healing the disease, for the which the best hope is the bone marrow transplant “.
Multidisciplinarity: fundamental, but it must be integrated
The survey promoted by Ail also shows an overall satisfaction with the multidisciplinary care of the patient after diagnosis. In the majority of cases (80%) the patient is followed by a multidisciplinary team composed of hematologist, nurse, psychologist and nutritionist – fundamental figures, just as their synergy is considered very important, even if the hope is to broaden the skills by including in the professionalism of the infectious disease specialist and of the palliative care practitioner. “We have literature data that confirm that the multidisciplinary team has positive repercussions even on the survival and the better quality of life of the patient”, underlines Fabio Effective, Head of Quality of Life Studies, Gimema Foundation for the promotion of scientific research in hematology. “Communication is also a crucial aspect as is the speed with which laboratory data is shared, the patient’s clinical condition and how he accepts and copes with the disease.”
Objective: to improve the quality of life
“An acute leukemia is a tumor that you cannot see but feel,” he continues Emanuela Massa. “Having also had a breast lesion, I can say that they are two completely different diseases: one leaves marks on the body, it is identifiable, the other is in the blood and blood is everywhere”. And so acute myeloid leukemia involves every aspect of the life of the patient and caregivers, who are completely absorbed by it. For this reason, implementing the quality of life of patients, currently assessed by all respondents with insufficient scores, is a priority. In this sense, the most popular proposal concerns home care services that are able to give continuity to the patient’s hospital management, for a 360-degree structured care path in the relationship between hospital and home care / management of the patient with acute myeloid leukemia. . This must certainly be accompanied by psychological support that is able to help patients and caregivers in the daily management of the disease and its impact on daily life. Having the possibility of being treated at home, in a family context, or being able to rely on small but close to home centers instead of going for long periods to large (often crowded) reference hospitals have an important impact on the perception of the disease, concludes Massa. . “The problem is that this type of service is very often not integrated in a structured way in hospitals, but organized in a ‘home’ way, so to speak, by associations such as Ail”, he reiterates. Sergio Amadori, honorary professor of hematology and national councilor Ail. “And where Ail does not arrive, what happens? The results of this survey show us a precise path and encourage us to continue knocking on the door of the institutions. The Pnrr talks about investments in local medicine and reinforcement of hospital staff: expectations are high, but words must be followed by deeds ”.