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.
Table of contentsA1 Hope and despair in the current treatment of nasopharyngeal cancerIB TanI1 NPC international incidence and risk factorsEllen T ChangI2 Familial nasopharyngeal carcinoma and the use of biomarkersChien-Jen Chen, Wan-Lun Hsu, Yin-Chu ChienI3 Genetic susceptibility risk factors for sporadic and familial NPC: recent findingsAllan HildesheimI5 Genetic and environmental risk factors for nasopharyngeal cancer in Southeast AsiaJames D McKay, Valerie Gaborieau, Mohamed Arifin Bin Kaderi, Dewajani Purnomosari, Catherine Voegele, Florence LeCalvez-Kelm, Graham Byrnes, Paul Brennan, Beena DeviI6 Characterization of the NPC methylome identifies aberrant epigenetic disruption of key signaling pathways and EBV-induced gene methylationLi L, Zhang Y, Fan Y, Sun K, Du Z, Sun H, Chan AT, Tsao SW, Zeng YX, Tao QI7 Tumor exosomes and translational research in NPCPierre Busson, Claire Lhuillier, Olivier Morales, Dhafer Mrizak, Aurore Gelin, Nikiforos Kapetanakis, Nadira DelhemI8 Host manipulations of the Epstein-Barr virus EBNA1 proteinSheila Mansouri, Jennifer Cao, Anup Vaidya, and Lori FrappierI9 Somatic genetic changes in EBV-associated nasopharyngeal carcinomaLo Kwok WaiI10 Preliminary screening results for nasopharyngeal carcinoma with ELISA-based EBV antibodies in Southern ChinaSui-Hong Chen, Jin-lin Du, Ming-Fang Ji, Qi-Hong Huang, Qing Liu, Su-Mei CaoI11 EBV array platform to screen for EBV antibodies associated with NPC and other EBV-associated disordersDenise L. Doolan, Anna Coghill, Jason Mulvenna, Carla Proietti, Lea Lekieffre, Jeffrey Bethony, and Allan HildesheimI12 The nasopharyngeal carcinoma awareness program in IndonesiaRenske Fles, Sagung Rai Indrasari, Camelia Herdini, Santi Martini, Atoillah Isfandiari, Achmad Rhomdoni, Marlinda Adham, Ika Mayangsari, Erik van Werkhoven, Maarten Wildeman, Bambang Hariwiyanto, Bambang Hermani, Widodo Ario Kentjono, Sofia Mubarika Haryana, Marjanka Schmidt, IB TanI13 Current advances and future direction in nasopharyngeal cancer managementBrian O’SullivanI14 Management of juvenile nasopharyngeal cancerEnis OzyarI15 Global pattern of nasopharyngeal cancer: correlation of outcome with access to radiotherapyAnne WM LeeI16 The predictive/prognostic biomarker for nasopharyngeal carcinomaMu-Sheng ZengI17 Effect of HLA and KIR polymorphism on NPC riskXiaojiang Gao, Minzhong Tang, Pat Martin, Yi Zeng, Mary CarringtonI18 Exploring the Association between Potentially Neutralizing Antibodies against EBV Infection and Nasopharyngeal CarcinomaAnna E Coghill, Wei Bu, Hanh Nguyen, Wan-Lun Hsu, Kelly J Yu, Pei-Jen Lou, Cheng-Ping Wang, Chien-Jen Chen, Allan Hildesheim, Jeffrey I CohenI19 Advances in MR imaging in NPCAnn D KingO1 Epstein-Barr virus seromarkers and risk of nasopharyngeal carcinoma: the gene-environment interaction study on nasopharyngeal carcinoma in TaiwanYin-Chu Chien, Wan-Lun Hsu, Kelly J Yu, Tseng-Cheng Chen, Ching-Yuan Lin, Yung-An Tsou, Yi-Shing Leu, Li-Jen Laio, Yen-Liang Chang, Cheng-Ping Wang, Chun-Hun Hua, Ming-Shiang Wu, Chu-Hsing Kate Hsiao, Jehn-Chuan ...
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