Abstract 1113P
Background
The Survey of Challenges in Access to Diagnostics and Treatment for NET Patients (SCAN) measured healthcare delivery to neuroendocrine tumor (NET) patients globally.
Methods
This analysis focused on the medical care received by NET patients who most often visited a medical oncologist (MO) comparing Europe and North America.
Results
1016 NET patients (43% of global sample, N=2359) reported a MO as the HCP most often visited for ongoing monitoring. These patients were mostly from two geographic areas: Europe (EU) [40%, 409/1016] and North America (NA) [40%, 410/1016]. 55% from EU (223/409) and 61% from NA (252/410) had Stage IV disease at diagnosis – both significantly higher than the percentage reported by patients globally (46%, 1077/2359, p<0.0001). Conventional imaging (EU 79%, 313/395; NA: 83%, 338/407) and Chromogranin A (EU 64%, 252/395, NA 60%, 243/407) were most commonly used for ongoing monitoring. 68Gallium DOTA-PET CT (EU: 30%, 119/395; NA 37%, 152/407, p<0.0001), other blood tests ( fasting serum glucose, fasting gastrin, glucagon, VIP; EU: 31%, 122/395; NA: 42%, 172/407, p<0.0001) and urine 5-HIAA (EU 29%, 116/395, NA: 35%, 142/407, p<0.0001) were also used, significantly more frequently in NA. MOs were the most often visited specialists for follow-up, although GPs/family doctors (EU, 48%, 197/409; NA: 44%, 181/410) and nurses (EU: 27%, 111/409; NA: 22%, 91/410) were also involved in the follow-up. In case of a third HCP involved, in EU this was most often a nuclear medicine specialist (23%) or a radiologist (20%), while in NA this was a surgeon (25%). Multidisciplinary teams (MDT) were rarely used both in EU (35%, 143/409) and NA (32%, 131/410). This patient sub-group’s key recommendation was to have more healthcare professionals knowledgeable in NETs (EU: 58%, 237/409, NA: 71%, 291/410 p<0.0001).
Conclusions
MOs are the leading HCPs for ongoing monitoring for almost half of NET patients globally. A global standard for NET monitoring and higher expertise in NETs among HCPs is needed, as data indicate significant differences in therapeutic and follow-up procedures and low usage of the multidisciplinary approach even in the EU and NA, the leading geographic areas for NET medical care.
Clinical trial identification
Editorial acknowledgement
Legal entity responsible for the study
International Neuroendocrine Cancer Alliance (INCA).
Funding
Ipsen, Novartis, ITM.
Disclosure
T. Kolarova: Financial Interests, Institutional, Advisory Board, null: Ipsen; Financial Interests, Institutional, Invited Speaker, null: Aptitude Health; Financial Interests, Personal, Other, Executive Director: International Neuroendocrine Cancer Alliance; Financial Interests, Institutional, Funding, null: Ipsen; Financial Interests, Institutional, Funding, INCA receives funding for its activities from pharma companies: Novartis; Financial Interests, Institutional, Funding, null: AAA; Financial Interests, Institutional, Funding, null: ITM; Non-Financial Interests, Advisory Role, null: European Cancer Organisation; Non-Financial Interests, Other, Active collaborator: WECAN; Non-Financial Interests, Member, Institutional or personal membership in the above listed organizations: UICC, NORD, ENETS, NANETS, E.C.O., WECAN. M. McDonnell: Non-Financial Interests, Other, Current Treasurer and President-Elect for 2022 in this global patient advocacy non-profit organisation: INCA; Non-Financial Interests, Other, Chairperson of the National Patient Advocacy Group for Neuroendocrine Cancer in Ireland: NET Patient Network Ireland. C.V. Bouvier: Financial Interests, Institutional, Advisory Board, INCA reimbursed for time given to AAA to review patient-facing publications: AAA; Non-Financial Interests, Member of the Board of Directors, Current President 2020-2022 of INCA and board member: INCA. M.E. Pavel: Financial Interests, Personal, Invited Speaker: AAA; Financial Interests, Personal, Advisory Board: AAA; Financial Interests, Personal, Advisory Board: Amgen; Financial Interests, Personal, Invited Speaker: Boehringer Ingelheím; Financial Interests, Personal, Advisory Board: Crinetics; Financial Interests, Personal, Invited Speaker: IPSEN; Financial Interests, Personal, Advisory Board: Riemser; Financial Interests, Institutional, Other, Fees for coordinating PI: IPSEN; Financial Interests, Institutional, Other, Fees for study conduct: ITM; Financial Interests, Institutional, Other, Local PI, fees for study conduct: Novartis. H. Singh: Financial Interests, Personal, Other, Moderator for Webinar: Novartis Corporation [M] Sdn Bhd; Non-Financial Interests, Member, Leadership Role, Non-remunerated position: Asia Pacific Neuroendocrine Tumour Society; Non-Financial Interests, Member: Asia Pacific Hepato-Pancreato-Biliary Association; Non-Financial Interests, Leadership Role: Asia-Pacific Neuroendocrine Tumour Society; Non-Financial Interests, Member: International Hepato-Pancreato-Biliary Association. S. Singh: Financial Interests, Institutional, Research Grant: Novartis/AAA; Financial Interests, Personal, Advisory Board: Ipsen; Financial Interests, Institutional, Research Grant: Ipsen. D. O'Toole: Financial Interests, Institutional, Speaker’s Bureau: Ipsen; Financial Interests, Institutional, Speaker’s Bureau, Speaker bureau & advisory board: Novartis; Non-Financial Interests, Institutional, Research Grant, Research grants while working in Beaujon, Clichy France; Also research grant in St Vincent's University Hospital (funding of a research registrar): Ipsen; Financial Interests, Personal and Institutional, Funding, Funded my MD research salary in 1996 to 1998 related to Helicobacter pylori infection: Wyeth lederle; Non-Financial Interests, Other, Pats Chair of ENETS; Current Executive Committee member of ENETS; Advisory board member of INCA: ENETS, INCA. J. Chen: Financial Interests, Personal, Invited Speaker: Hutchison Medipharma Limited; Financial Interests, Personal, Invited Speaker: Ipsen; Financial Interests, Personal, Invited Speaker: Novartis; Financial Interests, Personal, Invited Speaker: Pfizer. S. Leyden: Financial Interests, Personal, Full or part-time Employment, Co-founder and CEO: Neuroendocrine Cancer Australia. E. Gellerman: Financial Interests, Personal, Full or part-time Employment, am the CEO of the Foundation, a 501(c)3 charity that funds NET research: Neuroendocrine Tumor Research Foundation; Non-Financial Interests, Member, I am a member of The North American Neuroendocrine Tumor Society (NANETS): NANETS; Non-Financial Interests, Member, NETRF is a member of the National Organization for Rare Diseases (NORD) and I am on the Rare Cancer Coalition.: NORD; Other, Institutional, Invited Speaker, NETRF has received funding from these companies to help support patient education activities or research grants awarded to other institutions: Ipsen, Advanced Accelerator Applications, TerSera, Lantheus, Crinetics,. C. Rodien-Louw: Financial Interests, Institutional, Research Grant, INCA: Ipsen; Financial Interests, Institutional, Research Grant, INCA: AAA; Financial Interests, Institutional, Research Grant: APTED. D. Van Genechten: Financial Interests, Institutional, Research Grant: Novartis Pharmaceuticals Corporation; Financial Interests, Institutional, Research Grant: Ipsen Pharma; Non-Financial Interests, Institutional, Member of the Board of Directors: vzw NET & MEN Kanker Belgium. All other authors have declared no conflicts of interest.