Survey of challenges in access to diagnostics and treatment for neuroendocrine tumor patients (SCAN): The diagnostic process of GEP-NETs in Australia, Canada, China, France, Germany, the United Kingdom, and the United States of America.

Abstract

502 Background: SCAN assessed the global delivery of NET diagnostics and treatment. This analysis focused on the diagnostic process in gastroenteropancreatic (GEP) neuroendocrine tumor (NET) patients in countries with more robust respondent samples (at least 100 units of analysis): Australia (AU), Canada (CA), China (CH), France (FR), Germany (DE), United Kingdom (UK), and the United States (USA). Methods: During Sept-Nov 2019, 2359 NET patients & caregivers, and 436 healthcare professionals (HCPs) completed a self-reported online survey, available in 14 languages, disseminated via INCA and its partner networks. Results: 71% (1670/2359) were GEP-NET patients, 71% of which were from 7 countries (1188/1670), namely AU (7%, 120/1670), CA (9%, 154/1670), CH (7%, 114/1670), FR (8%, 137/1670), DE (9%, 149/1670), UK (11%, 191/1670) and USA (19%, 323/1670). Primary GEP-NETs were predominantly small intestinal (SI) with similar proportions in AU, CA, DE, FR,, UK and US and smaller in CH (*p < 0.001, Chi-squared). Second most common primary was pancreatic NET (similar across countries). Misdiagnosis was very frequent and occurred at least once but most commonly multiple times (table). The most frequent misdiagnoses were irritable bowel syndrome (AU 60%, CA 34%, CH 14%, FR 27%, DE 31%, UK 55%, USA 55%) and gastritis (AU 42%, CA 37%, CH 51%, FR 51%, DE 37%, UK 30%, USA 51%). Patients presented with stage IV disease in more than half of cases in 5 countries (table). On average three HCPs were involved in the diagnostic process in all above-mentioned countries. The HCPs who most often suggested the test that led to the correct diagnosis were gastroenterologists in CH 28%, FR 43%, DE 34%, USA 28%, and GPs in AU 28%, CA 27%, and UK 24% (45/191). In the majority of cases the diagnosis was received in a hospital without a NET specialist, except for CH (AU 38%; CA 42%; CH 25%; FR 36%, DE 51%, UK 44%, USA 45%). Conclusions: SCAN demonstrates some interesting geographical variations with respect to tumor demographics and stage at presentation. Nonetheless, delayed GEP-NET diagnosis remains a significant global challenge. Enhanced knowledge about GEP-NETs in hospitals without NET specialists, especially among gastroenterologists and family doctors (GPs), will drive improvements in global NET care.[Table: see text]