Abstract 44P
Background
Several studies have highlighted the need to improve management of rare cancers, such as neuroendocrine tumors (NETs). To do this best, it is essential to involve and inform patients. This survey aimed to explore patient awareness regarding diagnosis and management of their rare neuroendocrine cancer.
Methods
An anonymous survey was conducted from April to September 2023, recruiting patients with NETs in about 30 clinics in Italy. We collected sociodemographics and diagnostic characteristics and data on patient’s awareness and knowledge about their cancer.
Results
We collected 435 reports. Patients were 45% females and 55% males. Median age was 65 years (21-90). Primary tumors sites were small intestine 29%, pancreatic 24%, lung 10%, other (e.g. MEN, Merkel cell carcinoma, paraganglioma) and non- specified 31%. 33% were followed at a general hospital, 34% at a university hospital and 25% at a clinical research hospital. 85% of patients know they have a rare cancer. Actually 22% of these do not know the real meaning of rare, so only 65% of patients have a full awareness of the meaning of rare cancer. 88% for patients were informed by a specialist about their rarity, only 12% by general clinicians, 9% by internet. 78% of patients know about the presence of a multidisciplinary team in their hospital, both in southern and northern Italy, and 36% were informed about their doctor’s consultation with a reference center about disease management. 43% of patients were enrolled in clinical trials, 57% at a clinical research hospital, 44% at a university hospital, 35% at a general hospital. Almost one in two patients is driving for health tourism, 29% outside their region, especially patients from the south of Italy and regardless of the clinic they are followed in. Patients are not informed about new radioligand therapy (70%), however, 72% are not worried about radioactivity. 77% of patients admit they do not know of advocacy group for patients. Less of 10% consult associations for information about their cancer, compared to 44% and 21% who consult the internet and information materials from their physician, respectively.
Conclusions
There is still work to be done to increase patient awareness and to improve their treatment path.
Clinical trial identification
Editorial acknowledgement
Legal entity responsible for the study
The authors.
Funding
Has not received any funding.
Disclosure
All authors have declared no conflicts of interest.