Neuroendocrine tumor (NET) Oceania patient experience: results from the first global NET patient survey - A collaboration between the International Neuroendocrine Cancer Alliance (INCA) and Novartis — ASN Events
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Neuroendocrine tumor (NET) Oceania patient experience: results from the first global NET patient survey - A collaboration between the International Neuroendocrine Cancer Alliance (INCA) and Novartis (#74)

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

Background: NETs are a rare heterogeneous group of malignancies, often with a delayed diagnosis. Although diagnosis of NETs is increasing, little has been published on the NET patient experience. We present data on the Oceania NET patient perspective.

Methods: In 2014,1928 NET patients from >12 countries, including Oceania (n=138: Australia, New Zealand, other Oceania countries [not specified by respondents]), participated in a survey on the NET patient experience conducted by Hall & Partners on behalf of INCA/Novartis and funded by Novartis. Comparisons were deemed significant at P<.05.


Results: Oceania patient-reported NET types included gastroenteropancreatic (70%), lung/thymus (11%), and other/unknown (19%).Most patients reported G1/G2 (56%) functional disease (50%); gastrointestinal(GI) NETs were more likely than pancreatic NETs (pNET) to be low grade (G1: 50% vs 32%) and functional (58% vs 23%). 54% of NETs had metastasized at diagnosis, significantly greater for GI/pNET (71%/62%) than lung NET (37%). 38% reported fair/poor health, and 71% said NETs had a negative impact on their lives, including overall energy levels (72%) and emotional health (66%). Having NETs made patients feel anxious/worried (63%) and concerned (44%). Patients made numerous lifestyle adjustments, including dietary changes (GI/pNET, 61%/55%; lung NET, 34%) and increased travel (60%) and related spending (57%) for medical appointments. 81% of respondents not working (n=27) stopped due to NETs; 30% of retirees (n=37) had to stop working earlier than planned. Patients felt well supported by their HCPs, particularly oncologists/nurses (82%/87%), nuclear medicine specialists (82%), and surgeons (73%). Patients believed better access to NET specific treatments/more awareness of NETs (58%/58%), NET specific information (52%) and access to a NET medical team (48%) would help them live better with NETs.


Conclusion: This large global NET patient survey demonstrated a substantial impact of NETs Oceania patients and identified areas for improvement in patient access.

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