Supporting the

Neuroendocrine Cancer Community

Care experiences of patients with neuroendocrine tumours (NETs) at follow-up

Oct 9, 2023

Supportive Care in Cancer –
The unmet information needs, quality of life, and care experiences of patients with neuroendocrine tumours (NETs) at follow-up: 6 months from diagnosis
Read article here
Patients with NC’s often experience delays in diagnosis, as their symptoms are frequently mistaken for other conditions. They also struggle with unclear treatment pathways and a lack of disease-specific supportive care. Many patients report dissatisfaction with the organization of their care, leading to impaired psychosocial function and increased anxiety.
The study aimed to understand changes in the care preferences, patient experiences, and quality of life of NC patients at a 6-month follow-up. It found that information needs were high, especially at the time of diagnosis, but many patients did not receive or understand the written information about their cancer. While most patients sought disease-related information online, two-thirds did not find online resources useful.
The article concludes that information needs persist as a top priority for NC patients, as they continue to face difficulties in accessing and understanding information about their condition. Access to high-quality, comprehensible information is essential for improving patient engagement in medical decision-making, reducing anxiety, and promoting better care.