Neuroendocrine tumors (NETs) are rare and complex neoplasms with increasing incidence and prevalence worldwide. SCAN assessed global delivery of NET healthcare.
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.
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 (5-points 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]).
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.
Legal entity responsible for the study
International Neuroendocrine Cancer Alliance.
Ipsen, ITM, Novartis.
J. Chen: Advisory/Consultancy: Novartis; Advisory/Consultancy: Pfizer; Advisory/Consultancy: Ipsen. S. Singh: Research grant/Funding (institution): Novartis; Honoraria (self): Ipsen; Honoraria (self): Novartis. All other authors have declared no conflicts of interest.
© 2020 European Society for Medical Oncology. Published by Elsevier Inc. All rights reserved.