Survey of challenges in access to diagnostics and treatment for neuroendocrine tumor (NET) patients (SCAN): Global disparities in quality healthcare for NETs.

Abstract

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.

Abstracts Presented at the 14th Annual Multidisciplinary Neuroendocrine Tumor Medical Virtual Symposium of the North American Neuroendocrine Tumor Society, November 4–6, 2021

“…Results: Six-hundred thirty patients were identified for the incidence analysis and 149 patients for prevalence and CSS analyses. MANEC-P incidence-rate (12) was 0.011/100,000 populations, significantly higher in male, black and peaked at 75-79-years of age and was highest in the Northeast region (0.013) and lowest in the Midwest (0.009) region ( P < 0.01). A decreasing trend in MANEC-P incidence was observed (average annual percentage change = -0.71), with a significant difference between 2001-2010 and 2010-2017 (7.89 vs -11.13, P < 0.05).…”

“…C-12 Urinary Neuroendocrine Neoplasms (NENs) Treated in the "Modern Era": A Multicenter Retrospective Review Bryan Khuong Le, 1 Patrick W. McGarrah, 2 Julia Whitman, 1 Alan Paciorek, 1 Nitya Raj, 3 Diane Reidy-Lagunes, 3 Haley Hauser, 3 Tiffany Le, 3 Jaydira Del Rivero, 4 Andrea Apolo, 4 Amr Mohamed, 5 David L. Chan, 6 Kathleen Batty, 6 Emily K. Bergsland, 1 Thorvardur R. Halfdanarson. Chunmei Bai, 1 Jianming Xu, 2 Lin Shen, 3 Jie Li, 3 Zhiwei Zhou, 4 Zhiping Li, 5 Yihebali Chi, 6 Xianjun Yu, 7 Enxiao Li, 8 Nong Xu, 9 Tianshu Liu, 10 Wenhui Lou, 10 Yuxian Bai, 11 Xianglin Yuan, 12 Xiuwen Wang, 13 Ying Yuan, 14 Jia Chen, 15 Sha Guan, 16 Songhua Fan, 16 Weiguo Su. 16 Background: Two previous phase 3 studies (NCT02589821, NCT02588170) have demonstrated surufatinib significantly improved progression-free survival compared with placebo in patients with advanced pancreatic neuroendocrine tumors (NETs) and extrapancreatic NETs.…”

“…Conclusions: Results of this post-hoc analysis were consistent with the primary reports on surufatinib in the SANET-ep primary analysis, and improved outcomes were observed across major subgroups in patients with advanced well-differentiated extrapancreatic NETs. Xianjun Yu, 1 Jianming Xu, 2 Lin Shen, 3 Chunmei Bai, 4 Jie Li, 3 Zhiwei Zhou, 5 Zhiping Li, 6 Enxiao Li, 7 Xianglin Yuan, 8 Yihebali Chi, 9 Yongmei Yin, 10 Wenhui Lou, 11 Nong Xu, 12 Yuxian Bai, 13 Tao Zhang, 14 Dianrong Xiu, 15 Xiuwen Wang, 16 Sha Guan, 17 Songhua Fan, 17 Weiguo Su. 17 Background: In the phase 3 SANET-p trial (NCT02589821), surufatinib significantly increased progression-free survival (PFS) versus placebo in patients with progressive, well-differentiated, advanced pancreatic neuroendocrine tumors (NETs).…”

“…Disease control (DC) (complete, partial response, and stable disease) was 80% at 11-month follow-up. Zhiwei Zhou, 1 Jianming Xu, 2 Lin Shen, 3 Jie Li, 3 Chunmei Bai, 4 Yihebali Chi, 5 Zhiping Li, 6 Nong Xu, 7 Ru Jia, 2 Enxiao Li, 8 Tianshu Liu, 9 Yuxian Bai, 10 Ying Yuan, 11 Xingya Li, 12 Xiuwen Wang, 13 Jia Chen, 14 Wei Wang, 1 Sha Guan, 15 Songhua Fan, 15 Weiguo Su. 15 7 The First Affiliated Hospital of Zhejiang University, Hangzhou, China; 8 The First Affiliated Hospital of Xi'an Jiaotong University, Xi'an, China; 9 Zhongshan Hospital of Fudan University, Shanghai, China; 10 Harbin Medical University Cancer Hospital, Harbin, China; 11 The Second Affiliated Hospital, Zhejiang University School of Medicine, Hangzhou, China; 12 The First Affiliated Hospital of Zhengzhou University, Zhengzhou, China; 13 Qilu Hospital of Shandong University, Jinan, China; 14 Jiangsu Cancer Hospital, Nanjing, China; 15 Hutchison MediPharma Limited, Shanghai, China.…”

“…Using the BDI-II, 40.6% patients had mood disturbances, including 22.1% above the level of clinical depression and 4.7% with severe depression. FACT-Cog assessment revealed moderate perceived cognitive impairment (median, 63; IQR, 50-68; possible range, 0-72), considerable reduction in perceived cognitive ability (median, 20, IQR, 15-23; possible score, 0-28), severe effect regarding comments received from others (median, 16; IQR, 14-16; possible score, 0-16) and quality of life(median, 15; IQR,(11)(12)(13)(14)(15)(16) possible score,(0)(1)(2)(3)(4)(5)(6)(7)(8)(9)(10)(11)(12)(13)(14)(15)(16). BDI-II and FACT-Cog components did not correlate with ESAS for individual symptoms or total scores.…”