Global challenges in access to diagnostics and treatment for neuroendocrine tumor (NET) patients
Dureja S, McDonnell M, Van Genechten D, Bouvier C, Kolarova T, O'Toole D, Singh H, Chen J, Howe J, Singh S, Rodien-Louw C, Leyden S, Gellerman E, Herman J, Pavel ME (2023)
Publication Type: Journal article, Review article
Publication year: 2023
Journal
DOI: 10.1111/jne.13310
Abstract
SCAN, an online survey, measured access to diagnosis, treatments and monitoring of neuroendocrine tumor (NET) patients globally. Between September and November 2019, NET patients and healthcare professionals (HCPs) completed an online, semi-standardized survey with 54 patient questions and 33 HCP questions. A total of 2359 patients with NETs and 436 HCPs responded. Misdiagnosis was common (44% [1043/2359]). Mean time to diagnosis was 4.8 years (standard deviation [SD], 6.2). Compared with global figures (60% [1407/2359]), the availability of 68Ga-DOTA positron emission tomography (PET)/computed tomography (CT) was significantly lower in Asia (45% [126/280]) and higher in Oceania (86% [171/200]). HCPs reported that 68Ga-DOTA PET/CT was free/affordable to fewer patients in Emerging and Developing Economies (EDE) than Advanced Economies (AE; 17% [26/150] and 59% [84/142], respectively). Compared with global data (52% [1234/2359]), patient-reported availability of peptide receptor radionuclide therapy (PRRT) was significantly lower in Asia (31% [88/280]) and higher in Oceania (61% [122/200]). Significant differences were observed in average annual NET specialist costs between AE and EDE ($1081 and $2915, respectively). Compared with AE, patients in EDE traveled further for NET specialists (1032 [SD, 1578] and 181 [SD, 496] km, respectively). Patients and HCPs both recommended referral to HCPs that were more knowledgeable in the field of NETs and had better access to NET experts/specialist centers. National care pathways, enhancing HCP NET knowledge and ensuring effective diagnostics and access to appropriate treatments are crucial to improving patient survival and NET care worldwide.
Authors with CRIS profile
Involved external institutions
Carcinoid and Neuroendocrine Tumor Society (CNETS) India
India (IN)
NET Patient Network
Ireland (IE)
NET & MEN Cancer vzw
Belgium (BE)
Neuroendocrine Cancer UK
United Kingdom (GB)
St Vincent's University Hospital
Ireland (IE)
Prince Court Medical Centre
Malaysia (MY)
Sun Yat-Sen University
China (CN)
University of Iowa
United States (USA) (US)
University of Toronto
Canada (CA)
Association de Patients porteurs de Tumeurs Endocrines Diverses (APTED)
France (FR)
NeuroEndocrine Cancer Australia
Australia (AU)
Neuroendocrine Tumor Research Foundation (NETRF)
United States (USA) (US)
Carcinoid-NeuroEndocrine Tumour Society (CNETS)
Canada (CA)
India (IN)
NET Patient Network
Ireland (IE)
NET & MEN Cancer vzw
Belgium (BE)
Neuroendocrine Cancer UK
United Kingdom (GB)
St Vincent's University Hospital
Ireland (IE)
Prince Court Medical Centre
Malaysia (MY)
Sun Yat-Sen University
China (CN)
University of Iowa
United States (USA) (US)
University of Toronto
Canada (CA)
Association de Patients porteurs de Tumeurs Endocrines Diverses (APTED)
France (FR)
NeuroEndocrine Cancer Australia
Australia (AU)
Neuroendocrine Tumor Research Foundation (NETRF)
United States (USA) (US)
Carcinoid-NeuroEndocrine Tumour Society (CNETS)
Canada (CA)
How to cite
APA:
Dureja, S., McDonnell, M., Van Genechten, D., Bouvier, C., Kolarova, T., O'Toole, D.,... Pavel, M.E. (2023). Global challenges in access to diagnostics and treatment for neuroendocrine tumor (NET) patients. Journal of Neuroendocrinology. https://doi.org/10.1111/jne.13310
MLA:
Dureja, Sugandha, et al. "Global challenges in access to diagnostics and treatment for neuroendocrine tumor (NET) patients." Journal of Neuroendocrinology (2023).
BibTeX: Download