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Poster display session: Basic science, Endocrine tumours, Gastrointestinal tumours - colorectal & non-colorectal, Head and neck cancer (excluding thyroid), Melanoma and other skin tumours, Neuroendocrine tumours, Thyroid cancer, Tumour biology & pathology

4247 - Unmet needs in the management of neuroendocrine tumours (NETs): A global survey of patients, patient advocates and healthcare professionals


21 Oct 2018


Poster display session: Basic science, Endocrine tumours, Gastrointestinal tumours - colorectal & non-colorectal, Head and neck cancer (excluding thyroid), Melanoma and other skin tumours, Neuroendocrine tumours, Thyroid cancer, Tumour biology & pathology


Tumour Site

Neuroendocrine Neoplasms


Catherine Bouvier


Annals of Oncology (2018) 29 (suppl_8): viii467-viii478. 10.1093/annonc/mdy293


C.V. Bouvier1, M. Caplin2, S. Conroy3, P. Davies4, S. Dureja5, M. Falconi6, P. Ferolla7, G.A. Fisher8, G. Goldstein9, R.J. Hicks10, R. Hollander11, T. Kolarova12, B. Lawrence13, S. Leyden14, Y. Majima15, D. Metz16, D. O'Toole17, P. Ruszniewski18, B. Wiedenmann19

Author affiliations

  • 1 Net Patient Foundation, NET Patient Foundation, CV32 4JL - Leamington Spa/GB
  • 2 Neuroendocrine Tumour Unit, Royal Free Hospital School of Medicine, NW3 2QG - London/GB
  • 3 -, Unicorn Foundation, Auckland/NZ
  • 4 Neuroendocrine Tumour Unit, Royal Free London NHS Foundation Trust, London/GB
  • 5 Nuclear Medicine, Fortis Memorial Research Institute, Gurgaon/IN
  • 6 Department Of Surgery, IRCCS San Raffaele, 20132 - Milan/IT
  • 7 Coordinator, Umbria Regional Cancer Network, 06126 - Perugia/IT
  • 8 Medical Oncology, Stanford University Medical Center, 94304 - Stanford/US
  • 9 Chief Operating Officer, The Carcinoid Cancer Foundation, New York/US
  • 10 Nuclear Medicine, Peter MacCallum Cancer Center, 3000 - Melbourne/AU
  • 11 -, Neuroendocrine Tumor Research Foundation NET, 02116 - Boston/US
  • 12 -, International Neuroendocrine Cancer Alliance (INCA), 02116 - Boston/US
  • 13 Faculty Of Medical & Health Sciences, University of Auckland Faculty of Medical & Health Sciences, 1703 - Auckland/NZ
  • 14 Management, Unicorn Foundation, Blairgowrie/AU
  • 15 President, NPO PanCAN Japan, 102-0071 - Tokyo/JP
  • 16 Division Of Gastroenterology, University of Pennsylvania, Philadelphia/US
  • 17 Neuroendocrine Tumour Clinic, St Vincents University Hospital, 4 - Dublin/IE
  • 18 Division Of Gastroenterology And Pancreatology, Hôpital Beaujon, 92110 - Clichy/FR
  • 19 Division Of Hepatology And Gastroenterology, Universitätsklinik Charité, Campus Virchow Klinikum, 13353 - Berlin/DE


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Abstract 4247


The International Neuroendocrine Cancer Alliance (INCA) supports NET patients (and their families) by advocating on their behalf to improve diagnosis, care and research. The current survey was undertaken to identify and describe unmet needs in good quality care for NET patients.


Patients and family, healthcare professionals (HCPs) and patient advocates were surveyed online (Feb-Mar 2017) completing 35 questions covering: Information; Standards of care; Diagnostics and treatment; Research.


443 responses from 26 countries were collected: 338 patient/family; 70 HCPs; 35 advocates. Patients reported several information gaps at diagnosis, which were not perceived by HCPs (Table). 46% of patients felt their needs about treatment options were fully/mostly met, compared with 88% of HCPs. Many patients (70%) sought information via patient association websites, with 62% feeling this fully/mostly met their needs. 32% of patient advocates felt appropriate standards of care are not met, particularly in terms of psychological (76%) and mental health (71%) care and holistic support (e.g. diet, exercise; 65%). While 90% of HCPs stated MDT care was always/sometime provided, only 66% of patients reported seeing a MDT. Access to Gallium-68-DOTATATE/DOTATOC PET/CT (patients 72%; HCPs 86%; advocates 85%) and PRRT (42%; 77%; 95%) were the major unmet diagnostic and treatment needs. More involvement by patients in research was desired (patients 53%; HCPs 57%; advocates: 82%), particularly in clinical trials and in raising the profile of NET research. The research priority for patients and advocates was in earlier, more accurate diagnosis, while HCPs prioritised clinical trials to improve treatment.Table: 1328P

Informational needs not met at diagnosis

Relevant clinical trials53%6%
NETs research53%6%
Psychological care48%13%
Signposting to patient associations44%4%
Advice on how to manage the condition34%1%


The INCA survey has highlighted areas for improvement related to information provision, access to gold standard care and attention, focus and patient involvement in research.

Clinical trial identification

Legal entity responsible for the study

The International Neuroendocrine Cancer Alliance.


Neuroendocrine Tumor Research Foundation.

Editorial Acknowledgement

Strategen Limited provided editorial support.


All authors have declared no conflicts of interest.

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