The cost of neuroendocrine tumor patient healthcare: Comparison between advanced economies and emerging and developing economies.
Authors: Elyse Gellerman, Catherine Bouvier, Mark McDonnell, Christine Rodien-Louw, Dirk Van Genechten, Simone Leyden, Sugandha Dureja, Teodora Kolarova
Journal: Journal of Clinical Oncology (2021)

64 Background: The Survey of Challenges in Access to Diagnostics and Treatment for NET Patients (SCAN) measured the delivery of healthcare to neuroendocrine tumor (NET) patients globally. This analysis focused on the cost of NET care, comparing results between Advanced Economies (AE) and Emerging and Developing Economies (EDE). Methods: During Sept-Nov 2019, 2359 NET patients and 436 healthcare professionals (HCPs) from 68 countries across 6 continents completed an online self-report survey, available in 14 languages, disseminated by INCA and its partner organizations. Results: Of all respondents, 88% [2076/2359] were AE NET patients/carers, and 12% [283/2359] were from EDE. HCPs were evenly spread 51% AE [221/436] vs. 49% EDE [215/436]. Almost all patients (94% (2218/2359) were on follow-ups, most commonly on conventional imaging (74%, 1745/2359) and Chromogranin A (ChA) (50%, 1179/2359) both administered with similar frequency every third month. 66% of NET patients globally (1557/2359) declared оut-of-pocket costs related to disease management, significantly higher for EDE (84%, 238/283) vs AE (64%, 1333/2076) p&lt;0.0001 by Chi-square). One third of EDE NET patients (33%, 93/283) spent from 50% to 100% of their annual household income on disease management over the past 12 months. 41% of AE patients (41%, 851/2076) spent up to 10% of the same. State healthcare coverage was claimed by half of AE NET patients (51%, 1064/2076). A national healthcare plan that covered NETs was mentioned by only a third of EDE NET patients (30%, 85/283). According to HCPs, newer, more specialized tools were the least affordable to all NET patients. PRRT was reported as not affordable by 9% of AE HCPs (20/221) and by significantly more – 21% of EDE HCPs (45/215) p&lt;0.0001. Gallium 68 DOTA PET was reported as not affordable by 9% of AE (20/221) and 10% of EDE HCPs (22/215). This monitoring tool was somewhat affordable to patients according to 25% of AE (54/221) and 62% of EDE HCPs (133/215) p&lt;0.0001. According to HCPs, leading specialized services, where available, were somewhat affordable or not at all affordable to NET patients, i.e. a clinical nurse specialized in NETs – not or somewhat affordable ( HCPs AE 16%, 17/108; EDE 37%, 16/43, p&lt;0.0001); a multidisciplinary team (HCPs AE 18%, 34/194; EDE 39%, 68/174, p&lt;0.0001); a NET specialist (HCPs AE 21%, 42/200; EDE 36%, 46/127, p&lt;0.0001), psychological care (HCPs AE 58%, 42/124; EDE 41%, 11/27, p&lt;0.0001). Psychological care was reported to be available by only 13% of EDE HCPs (27/215). Conclusions: More adequate healthcare funding and better and more inclusive healthcare plans to utilize the optimal diagnostic and treatment tools available to improve outcomes and quality of life for NET patients is needed globally. Discrepancies between AE and EDE healthcare accessibility are huge.