Publication-only abstracts (abstract number preceded by an "e"), published in conjunction with the 2019 ASCO Annual Meeting but not presented at the Meeting, can be found online only.
Access to diagnostics and treatment of neuroendocrine tumors (NETs): The difference between patient perception and reality.
Central Nervous System Tumors
Central Nervous System Tumors
2019 ASCO Annual Meeting
J Clin Oncol 37, 2019 (suppl; abstr e13524)
Author(s): Simone Leyden, Teodora Kolarova, Catherine Bouvier, Martyn E. Caplin, Siobhan Conroy, Philippa Davies, Sugandha Dureja, Massimo Falconi, Piero Ferolla, George A. Fisher, Grace Goldstein, Rodney J. Hicks, Benjamin James Lawrence, Yoshiyuki Majima, David C. Metz, Dermot O'Toole, Philippe B. Ruszniewski, Bertram Wiedenmann, Ron Hollander, International Neuroendocrine Cancer Alliance; Unicorn Foundation, Victoria, Australia; International Neuroendocrine Cancer Alliance, Boston, MA; NET Patient Foundation, Leamington Spa, United Kingdom; Neuroendocrine Tumour Centre, St. Vincent's University and Department of Clinical Medicine, St. James Hospital and Trinity College, Dublin, Ireland; Unicorn Foundation, Auckland, New Zealand; Royal Free Hospital, London, United Kingdom; Department of Nuclear Medicine & Molecular Imaging, Fortis Memorial Research Institute, Gurgaon, India; Università Vita Salute - Ospedale San Raffaele, Milan, Italy; Dept. Internal Medicine and Endocrine Sciences, University of Perugia and Multidisciplinary Group for Diagnosis and Treatment of Neuroendocrine Tumors, Umbria Region Cancer Network, Perugia, Italy; Stanford University School of Medicine, Stanford, CA; The Carcinoid Cancer Foundation, Inc., White Plains, NY; Peter MacCallum Cancer Centre, Melbourne, Australia; Discipline of Oncology, Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand; Pancreatic Cancer Action Network, Tokyo, Japan; University of Pennsylvania School of Medicine, Philadelphia, PA; National Centre for Neuroendocrine Tumours, St. Vincent's University and Department of Clinical Medicine, St. James Hospital and Trinity College, Dublin, Ireland; Beaujon Hospital, Clichy, France; Charite University Hospital, Berlin, Berlin, Germany; Neuroendocrine Tumor Research Foundation, Boston, MA
Background: The aim of this global patient survey was to better understand the needs and expectations of patients with NETs regarding access to diagnostic tools and treatment. Methods: In 2017, an online, questionnaire survey of NET patients/family members, patient advocates and healthcare professionals (HCPs) was conducted. Results: In total, 443 participants from 26 countries responded: 338 patients/families; 35 advocates; 70 HCPs. Following NET diagnosis, many patients use patient association (69%) and HCP (48%) websites to fulfill their informational needs. Patients overestimated the availability of key diagnostic tools and treatments compared to HCPs: Gallium-68-Dotatate PET/CT scan was believed available by 28% of patients vs. 14% of HCPs; fluorodeoxyglucose PET by 77% of patients vs. 64% of HCPs; peptide receptor radionuclide therapy by 58% of patients vs. 23% of HCPs; genetic test/precision medicine by 75% of patients vs. 71% of HCPs; and transplantation by 86% of patients vs. 55% of HCPs. Reasons reported by patients and advocates for unavailability of treatment were: not provided by healthcare system (28% & 67%, respectively); non-referral (19% & 33%, respectively), unable to afford treatment (18% & 57%, respectively); treatment not covered by insurance (17% & 24%, respectively); distance to treatment centre (15% & 48%, respectively). Almost a third (30%) of patients had to travel more than 300 km/186 miles for treatment or consultation with a NET specialist, while 34% of patients did not have access to an MDT and those that did may be in contact with them less than once per year (14%). In contrast, advocates and HCPs believe there is wider availability of MDTs (94% and 70%, respectively). Conclusions: Patients are increasingly well-educated about NETs and often travel considerable distances to obtain specialist treatment. However, there remains considerable disparity in what patients feel is available to them in terms of the latest tools and treatments, compared to what is there in reality. This significant difference in perception needs to be managed delicately by both advocates and healthcare professionals.