1115P Beyond classic hereditary neuroendocrine tumors (NET) syndromes

Abstract

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, N¼2359) 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 e 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. 68 Gallium 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.