Background: Neuroendocrine tumors are uncommon and complex neoplasms with increasing incidence and prevalence worldwide. SCAN assessed global delivery of healthcare to NET patients.
Methods: During Sept-Nov 2019, 2359 NET patients/carers and 436 healthcare professionals (HCPs) from 68 countries completed an online survey, available in 14 languages.
Results: 12% NET patients/carers were from United Kingdom (UK) [279/2359], 5% from Ireland (IE) [119/2359]. Almost half of patients had stage IV NETs at diagnosis (Global: 46%[1077/2359]; UK: 45%[126/279]; IE: 41%[49/119]. After initial symptoms and tests, NET was the first diagnosis for about one third of patients (Global: 27%[640/2359]; UK: 28%[79/279]; IE: 35%[41/119]). 44%(1043/2359) of patients globally were initially misdiagnosed at least once with other conditions, this share being significantly higher in UK: 53%(148/279) vs global and IE 39%(46/119) (P<0.0001). Mean time to correct diagnosis for those misdiagnosed was aligned: globally 4.75 years (n=1043), 4.4 in UK (n=148) and 5.24 in IE (n=46). The majority of NET patients received their diagnosis at a hospital without a NET specialist (Global: 41%[968/2359]), UK: 45% [125/279]) vs IE: 50% [60/119]), and 19% globally vs. 23% both in UK and IE in a hospital with a NET specialist. In the UK every fourth NET patient received diagnosis in a medical center specialized in NETs (24%[68/279]), this ratio being significantly lower globally (11%[253/2359]) and in IE (9%[11/119]). The diagnostic tools that most often led to correct diagnosis were biopsy, higher in IE vs UK (Global: 59%[1392/2359]; UK: 54%[150/279]; IE 67%[80/119]) (P<0.0001) and CT scan, significantly higher in UK and IE vs global average usage (Global: 45%[1060/2359], UK 58%[162/279], IE 58%[70/119] (P<0.0001).
Conclusion: The high proportion of NET patients diagnosed with stage IV, which is associated with poorer patient outcomes, remains a global challenge. The experience of UK and Irish patients on their route to diagnosis is similar to that of the surveyed patients around the world. Access to specialized NET centers should be improved for all NET patients and more healthcare professionals knowledgeable in NETs are needed.