Defining NETs: Defining supportive care needs and psychological morbidity of patients with functioning versus non-functioning neuro-endocrine tumours (NETS)

Neuroendocrine tumours (NETs) are rare cancers that can affect almost any organ in the body, but are most commonly found in gastro-intestinal sites. NETs can either express hormones (functioning) or be non-expressive (non-functioning). Functioning NETs can be very aggressive and cause symptoms such as diarrhoea and flushing whereas non-functioning NETs are typically very slow-growing and mostly patients don’t experience any symptoms at all.

Despite these differences in terms of symptom severity ranging from no symptoms at all (non-functioning) to severe flushing and diarrhoea (functioning), patients are managed as a unified group. Therefore the purpose of this study is to improve our understanding of the different experiences and needs of patients with functioning versus non-functioning NETs and to identify the unique needs of each group.

To our knowledge this is the first study of its kind to undertake this work.


The objectives of this study are:

  1. To profile the psychosocial, quality of life and clinical characteristics of patients with functioning and non-functioning NETs. We will investigate differences in quality of life, and will assess anxiety, depression, fatigue, pain (interference and intensity), sleep disturbance, physical function, satisfaction with social roles and activities, supportive care needs, and the experiences of the health care system between newly diagnosed patients with functioning and non-functioning NETs at diagnosis (baseline) and 6 month follow-up.
  2. To design and develop a phone-based intervention that is targeted to the NET subtype and tailored to the individual’s psychosocial and clinical profile.
  3. To pilot test the intervention through the Unicorn Foundation Support Hotline which is accessible to patients nationwide from both metro and rural areas.


Peter MacCallum Cancer Centre


Victorian Cancer Agency

Principal Investigator/s

Dr Lisa Guccione

Contact details

Ms Alexandra Billett

Email: [email protected]