Treatment for neuroendocrine tumors or NETs, rare and complex neoplasms that represent less than 0.5% of malignant tumors, is increasing. But it is necessary to define tailor-made diagnosis and treatment care paths, as recently reiterated at a conference in Rome. Often late diagnoses, non-specific symptoms, fragmentation of investigations and territorial inhomogeneities can in fact slow down the identification of patients and their access to specialist centres. This is why a document created as a dedicated Position Paper takes on importance. Here are the key points to highlight.
Five points to address
These tumors have a significant healthcare impact due to the long survival of patients and the need for monitoring and specialist care over time. The biological variability of the disease, the heterogeneity of the clinical manifestations and the frequent non-specificity of the symptoms make the path leading to the diagnosis particularly complex.
The Position Paper, created by a panel of clinical experts and representatives of patient associations, with the non-conditional support of Ipsen, was born from the need to face an increasingly relevant challenge for the National Health Service: transforming scientific and therapeutic progress into a concrete benefit for people with neuroendocrine tumors, through paths capable of guaranteeing timely diagnoses, correct characterization of the disease, multidisciplinary management and continuity of care. And for this purpose it identifies five operational priorities:
- reduce diagnostic delays and improve the appropriateness of tests, avoiding fragmented processes and unnecessary repetitions;
- strengthen the network between the territory, specialists and reference centers, promoting timely access to the patient care path;
- promote shared criteria for diagnosis, characterization and stratification of patients, even in incidental forms;
- invest in the training of healthcare professionals involved in the different phases of the process;
- enhance the role of patient associations in defining needs and care models.
Be careful to recognize the situation
Diagnosis represents one of the main critical points. Symptoms that are often subtle or common to other conditions can lead to long journeys, with the involvement of several specialists before arriving at a center with dedicated experience. In neuroendocrine tumors, the challenge today does not only concern the availability of new therapies, but the system’s ability to rapidly identify patients who can benefit from them. Multidisciplinarity and the presence of organized networks are fundamental to guarantee correct characterization of the disease and an appropriate therapeutic choice.
A central role in the document is also reserved for the patients’ perspective. In addition to access to therapies, in fact, there are needs related to continuity of care, the availability of clear information after diagnosis, the management of symptoms, the quality of life and the possibility of being accompanied along a complex path. Patients chapter: for people with neuroendocrine tumors, treatment does not just coincide with therapy. It means being able to count on correct information, on collaborating professionals and on a recognizable path, regardless of where you live. Reducing fragmentation means concretely improving the experience of patients and their families.
The panel of experts
The panel of clinicians is made up of Nicola Fazio, Director of the Digestive and Neuroendocrine Tumors Program, European Institute of Oncology (IEO), IRCCS, and head of the ENETS Center of Excellence for neuroendocrine neoplasms of the digestive system and thoracic neuroendocrine tumors; Francesco Panzuto, ENETS Center of Excellence for Neuroendocrine Tumors, AOU Sant’Andrea, Rome; Annamaria Colao, Vice President of the Superior Council of Health and Director of the Integrated Care Department of Endocrinology, Diabetology, Andrology and Nutrition at the University of Naples “Federico II”; Maria Luisa De Rimini, former Director of the Nuclear Medicine Unit, AORN Ospedali dei Colli, Monaldi.
The panel of patient associations saw the participation of NET Italy ETS, AINET ODV – Vivere la Speranza and La Lampada di Aladino ETS.
