Poster Presentation COSA 2015 ASM

Symptom burden of Australia and New Zealand (ANZ) patients with Neuroendocrine Tumours (NET)  (#348)

David L Chan 1 , John Leyden 2 , Michael Michael 3 , Timothy J Price 4 , Stephen Clarke 1 , Nick Pavlakis 1 , Mustafa Khasraw 1
  1. Royal North Shore Hospital, St Leonards, NSW, Australia
  2. Unicorn Foundation, Mosman, NSW, Australia
  3. Medical Oncology, Peter Maccullum Cancer Centre, East Melbourne, VIC, Australia
  4. Queen Elizabeth Hospital and University of Adelaide, Adelaide, SA, Australia

Background:

NETs are rare and heterogeneous malignancies. Their management is challenging due to non-specific symptoms and delayed diagnosis. We report a survey aiming to describe frequency of symptoms reported by patients diagnosed with NET and impact of time since diagnosis.

Methods:

The ANZ cohort of an international online patient survey, conducted between February-May 2014, was analysed for patient symptoms. Data requested included demographics, time since diagnosis (<5 years versus 5+ years), location of primary tumour, functional symptoms (flushing, diarrhoea, wheezing, cramping) and non-functional symptoms (e.g. pain or pressure from growing tumour). Findings were compared using Chi-squared test with significance at p <0.05.

Results:

In ANZ, 138 patients completed the survey (68% female, average age 54 years; Grade 1-2 in 56%, Grade 3 in 3% and unknown in 41%). The primary was most commonly in the gastrointestinal tract (GI-NET, 49%), pancreas (pNET, 21%) and lung (9%).

50% of patients reported functional symptoms, 19% non-functional symptoms, 17% were asymptomatic and 14% uncertain.

Functional symptoms were reported in 67% of GI-NET, 38% of pNET and in 8% of pulmonary NET (p<0.0001). The most commonly reported functional symptoms were diarrhoea (n=63, 40%), skin reactions (including flushing) (n=59, 43%) and dyspnoea (n=46, 50%). Diarrhoea was reported in 63% of GI-NET, 31% of pNET and 8% of pulmonary NET (p<0.001).

The most commonly reported non-functional symptoms were fatigue (n=81, 73%), abdominal pain or cramping (n=59, 46%) and nausea (n=54, 37%).

Patients diagnosed < 5 years ago were less likely to have functional symptoms (43% vs 62%), more likely to have low grade NET (43% vs 25%) and reported less symptoms.

Conclusions:

Most NET patients have significant functional and non-functional symptoms. The incidence of functional symptoms, particularly diarrhoea, is higher in GI-NETs. Patients diagnosed more recently were more likely to have lower grade NETs with fewer symptoms.