Oral Presentation Asia Pacific Neuroendocrine Tumour Society 2018

Unmet needs in the global NETs patient community: an assessment of major gaps from the perspectives of patients, patient advocates and NET health professionals (#14)

Simone Leyden 1 , T Kolarova 2 , R Hollander 3 , C Bouvier 4 , M Caplin 5 , S Conroy 6 , P Davies 7 , S Dureja 8 , M Falconi 9 , P Ferolla 10 , G Fisher 11 , G Goldstein 12 , R Hicks 13 , B Lawrence 14 , Y Majima 15 , D Metz 16 , D O’Toole 17 , P Ruszniewski 18 , B Wiedenmann 19
  1. The Unicorn Foundation, Blairgowrie, VICTORIA, Australia
  2. International Neuroendocrine Cancer Alliance (INCA), Boston, US
  3. Neuroendocrine Tumor Research Foundation (NETRF), Boston, MA, USA
  4. Neuroendocrine Tumour Patients Foundation, Leamington Spa, UK
  5. Neuroendocrine Tumour Centre, St. Vincent's University , Dublin, Ireland
  6. Unicorn Foundation, Auckland, New Zealand
  7. Neuroendocrine Tumour Unit, Royal Free Hospital, London, UK
  8. Department of Nuclear Medicine & Molecular Imaging, Fortis Memorial Research Institute, , Gurgaon, Haryana, India
  9. Pancreatic Unit, University Vita e Salute, San Raffaele Hospital IRCCS, Milan, Italy
  10. Departments of Internal Medicine and Endocrine Sciences, University of Perugia, Perugia, Italy
  11. Medical Oncology, Stanford University School of Medicine, Stanford, CA, USA
  12. The Carcinoid Cancer Foundation, White Plains, NY, USA
  13. Department of Cancer Imaging, Peter MacCallum Cancer Centre, Melbourne, Australia
  14. Gastrointestinal Pathobiology Research Group, Yale University School of Medicine, New Haven, CT, USA
  15. Pancreatic Cancer Action Network, Tokyo, Japan
  16. Division of Gastroenterology, University of Pennsylvania School of Medicine, Philadelphia, PA, USA
  17. National Centre for Neuroendocrine Tumours, St. Vincent's University and Department of Clinical Medicine, St. James Hospital and Trinity College, Dublin, Ireland
  18. Division of Gastroenterology and Pancreatology, Beaujon Hospital, Paris, France
  19. Department of Hepatology, Gastroenterology and Endocrinology, Charité Medical School, Berlin, Germany

Aim: The International Neuroendocrine Cancer Alliance (INCA) undertook a survey to assess needs in quality care for NET patients.

Methods: In 2017, patients and family, healthcare professionals (HCPs) and patient advocates completed an online survey about NET information, standards of care, diagnostics/treatment and research.

Results: There were 443 respondents from 26 countries (338 patient/family; 70 HCPs; 35 advocates). Patients reported several information gaps at diagnosis that were not perceived by HCPs: relevant clinical trials (53% vs. 6%, respectively); NETs research (53% vs. 6%); psychological care (48% vs. 13%); signposting to patient associations (44% vs. 4%); advice on management (34% vs. 1%). Only 16% of patients felt their needs for information about treatment options were fully met (vs. 41% of HCPs). Many patients use patient association (70%) or HCP (49%) websites for information, with 53% finding this fully/mostly meets their needs. No advocates felt that patient needs at diagnosis were fully met, and over 32% believed that appropriate standards of care were not met, particularly related to psychological (76%) and mental health (71%) care and holistic support (65%). Nearly all (94%) advocates reported MDTs were available in their region and 70% of HCPs said care was by MDT; however, only 66% of patients reported MDT access. Overall, 50%of patients felt fully/mostly involved in decision making. Access to Gallium-68-DOTATATE/DOTATOC PET/CT scanning (patients 72%; HCPs 86%; advocates 85%) and PRRT (42%; 77%; 95%) were considered key challenges. Half of patients (48%) reported travelling >300km/186 miles to see a specialist. Patient involvement in research was a priority (patients 53%; HCPs 57%; advocates 82%), with patients and advocates focussed on earlier, more accurate diagnosis and HCPs on clinical drug trials.

Conclusions: There are major gaps in fulfilling the informational needs of patients, providing access to gold-standard care, and involving patients in research.