(by Nicola Simonetti) Also based on the survey "Voices count" which highlighted important information gaps reported by patients about the disease, the treatment path and the consequences caused by a blood cancer on the quality of life and respond more incisively to the needs of patients, the first national network, created within the historic Federation of Patient Associations of Voluntary Service in Oncology (FAVO), which brings together Patient Associations with blood cancer (president Davide Petruzzelli): a new and important association that wants to respond to the needs of people who have received or will receive a diagnosis of haematological neoplasm. Over 30.000 people in Italy receive a diagnosis of haematological neoplasia every year:
the incidence is constantly increasing, but also the number of those who cure or chronicize the disease.
From the survey, a significant figure emerges: two-thirds of respondents (65%), at the time of diagnosis, are not aware of the existence at the time of diagnosis, and just under half (41%) was invited to contact them, mostly from other patients. On the other hand, around 80% of those who turned to it found the support received very useful. Half of the patients the disease caused problems in their own work and those of family members, while more than 30% encountered difficulties in accessing credit and insurance products.
The birth of FAVO Hematologic neoplasms is inserted in an epidemiological context characterized by a constant increase in the incidence of onco-hematological diseases: in the last 13 years, in fact, the diagnoses of Non-Hodgkin's Lymphoma have increased by 45% and those of 26 leukemias %
Today, the five-year survival rate for all forms of leukemia is around 43% in adults, 50% in myeloma and reaches 75% for Hodgkin's Lymphoma, thanks above all to research and innovative therapies that have radically changed the clinical history of these diseases.
"Today in Italy - says Francesco De Lorenzo, president of FAVO, there are about 900.000 people cured of cancer, and this is a new and extremely important fact because it imposes a new goal on Patient Associations: to work together to eliminate the barriers that hinder the return to normal life. "Given that today thanks to research it is possible to heal, a diagnosis at a young age cannot constitute an insurmountable obstacle to social and work inclusion and, consequently, to the full realization of one's life".
Many lack of information complained by the patients: in fact only the 35% of the interviewees had heard of its pathology before the diagnosis, and mainly through television and radio or by relatives and friends, while more than two thirds of the interviewees (73%) it does not know what a biological sample is, a fundamental tool for a correct diagnosis and for the search for new treatments, when the patient decides to entrust it to a biobank. "When this happens, the patient has the right not only to accurate information, but also to give informed research consent, different and much more detailed than what is signed for access to care" - explains Elena Bravo, Senior Researcher of the Istituto Superiore di Sanità "An informed patient, aware of the potential of his own sample, as well as ensuring proper use of his biological material, can provide an essential contribution in defining ethical, social and scientific management principles".
Another significant information deficit that emerged from the survey concerns Informed Consent. 80% of respondents claim to have signed an Informed Consent, but only 66% believes they have received clear and complete information on care. "Informed Consent is not an instantaneous act" -DICE Francesco Angrilli, Head of Diagnosis Center and Lymphoma Therapy of the Spirito Santo Civil Hospital, Pescara - "but it is a real procedure in which the patient must also be in a position to ask questions and receive answers from the doctor, of the necessary time, if he considers it, to discuss the proposal with family members, doctors and / or trusted persons, before communicating their decision ". Too often, however, membership is limited to a signature on a document that is not fully understood and signed at a time of great emotional fragility.
Finally, with regard to psychological support, more than half of the patients interviewed (64%) declared that they had not received any proposal for specialized assistance: all those who, on the contrary, benefited from a psychologist through the services offered by the Patient Associations, they have benefited greatly, both personally and as a family.
Information that is denied or not exhaustive translates into fewer opportunities for treatment options, such as access to experimental clinical studies: less than 20% participated and only 11% received explanations of what it was: the fact that the vast majority did not answer the question, it is clear that information on treatment options is not shared between doctors and patients.
Today the therapeutic paths wind through less and less time spent in hospitals and more and more on the territory, and patients, unlike in the past, sometimes manage to lead a life close to normality, mostly lived away from their reference specialist: for this the role of the GP is decisive. "In order to avoid further inconvenience to the patient, already proven by the burden of the disease" - stresses Paolo Spriano, Vice President of SNAMID - "it is desirable that the communication between the specialist hematologist and GP and between these two medical figures and the patient be improved creating the triangulation necessary to correctly transfer the information regarding the evolution of the pathology and the cure. In a scenario of growing awareness of the role of communication between doctor and patient, the Associations, thanks also to their capital of hope and experience, can play a role of great support ".