127 Background: Neuroendocrine tumors (NETs) are rare and complex neoplasms with increasing incidence and prevalence worldwide. SCAN assessed global delivery of healthcare to NET patients. This analysis focused for the first time on healthcare quality evaluation by economic areas–Advanced Economies (AE) and Emerging and Developing Economies (EDE) classification used as per the International Monetary Fund. Methods: During Sept-Nov 2019, NET patients and healthcare professionals (HCPs) completed an online survey (available in 14 languages). Results: There were 2795 respondents from 68 countries across 6 continents. AE NET patients/carers were 88% [2076/2359], EDE were 12% [283/2359]. HCPs were evenly spread 51% AE [221/436] vs. 49% EDE [215/436]. The average evaluation score provided by NET patients to the healthcare received in the country they reside in for more than 6 months was 3.6 in AE, while one point lower 2.5 in EDE on a 5-point Likert scale (1-poor, 5-excellent). HCPs’ and NET patients’ scores were aligned: 3.9 as per AE HCPs (94% [208/221]), vs. 2.6 by EDE HCPs (68% [190/283]). The availability of top 3 most used NET treatments over the past 12 months was significantly lower in EDE: surgery in AE reached 85% (1765/2076) vs. EDE 71% (201/283) p<0.0001 [Chi-squared], somatostatin analogues - in AE 67% (1391/2076) vs. EDE 59% (167/283) p<0.0001, PRRT was 57% in AE countries (1183/2076), vs. EDE 33% (93/283) p<0.0001. Specialized services were of low usage globally and in deep disparity by economic areas, namely: NET specialist consultations (AE 55% [1143/2076] vs. EDE 40% [112/283] p<0.0001), multidisciplinary team care 34% (AE 34% [706/2076] vs. EDE 22% [63/283] p<0.0001), a clinical nurse specialized in NETs (AE 28% [589/2076] vs. EDE 7% [21/283] p<0.0001), psychological care (AE 13% [261/2076] vs. EDE 5% [15/283] p<0.0001), physical activities like yoga classes, trainings designed for cancer patients (AE 11% [220/2076] vs. EDE 3% [7/283] p<0.0001). State healthcare coverage was claimed by half of AE NET patients (51% [1064/2076]). National healthcare plan that covered NETs was mentioned by only a third of EDE NET patients (30% [85/283]. Conclusions: Availability of treatments and access to specialized NET healthcare is a global challenge and is in need of improvement. Additionally, the gap between AE and EDE in terms of treatments availability, support services usage, and state healthcare coverage is significant and manifests deep inequality.
Background: Neuroendocrine tumors (NETs) are rare and complex neoplasms with increasing incidence and prevalence worldwide. SCAN assessed global delivery of NET healthcare. Methods: During Sept-Nov 2019, NET patients and healthcare professionals (HCPs) completed an online survey, available in 14 languages, which was disseminated via social media and NET patient group networks. Results: There were 2795 respondents from 68 countries composed of 436 HCPs (of which medical oncologists (MO) comprised 25% [103/436]); 2359 NET patients/carers. The regions included: Europe (47%); North America (NA) (31%); Asia (12%); Oceania (9%]; South America & Africa (2%). Almost half (46% [1077/2359]) of patients had stage IV NETs. Mean time to diagnosis was 5 years and 1042 were misdiagnosed, lower in Asia and higher in NA (All: Europe 4.05 vs. NA 6.44 vs. Asia 2.28 vs. Oceania 4.81 (T-test, p<0.0001). The quality of healthcare provided was evaluated by NET patients at 3.5 (5points Likert scale) (All: Europe 3.61 vs. NA 3.61 vs. Asia 2.56, vs. Oceania 3.83) and by HCPs/MOs at 3.3/3.1 [All: 436, MO: 102]. Slightly over half of NET patients were consulted by a NET specialist in past 12 months (P12M), notably from Europe and Oceania (All: 53% [1273/2359]; Europe: 61% [672/1102], NA: 48% [348/727], Asia: 42% [118/ 280], Oceania: 53% [106/200], p<0.0001, Chi-squared). Only one third of patient cases were reviewed by a multidisciplinary team in P12M, less in NA and Asia (All: 33% [779/ 2359]; Europe: 38% [419/1102], NA: 29% [217/727], Asia: 22% [62/280], Oceania: 39% [70/200], p<0.0001. A MO was the most involved HCP in the follow-up in 60% of NET patients, particularly in NA and Oceania (All: Europe 54% [593/1102] vs. NA 75% [548/ 727] vs. Asia 34% [95/280], vs. Oceania 75% [150/200] p<0.0001). The most common recommendation to improve NET diagnosis and management, given by MO, was 'better access to NET experts/specialist centers (71% [77/103]). Conclusions:The delivery of healthcare to NET patients is in need of significant improvement globally to ensure proper and timely diagnosis and treatment. Improving access to multidisciplinary care should be a priority for healthcare systems when it comes to NETs.
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]
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