Characterisation of adult patients with neuroendocrine neoplasms and their journey to diagnosis

BACKGROUND: Neuroendocrine neoplasms (NENs) are rare and often present with non-specific symptoms. Diagnostic delays of 4 years or more have been reported in patient surveys, primarily attributed to low recognition of symptoms and multiple primary care consultations. However, population-based evidence is sparse. We characterised diagnostic pathways to guide improvement efforts. METHODS: We used National Cancer Diagnosis Audit (NCDA) 2018 data for all adults diagnosed with NEN of eleven cancer sites. Primary care-led investigations were grouped into blood, urinary, imaging, endoscopy, and other. The number of pre-referral consultations, the primary care interval (PCI), and the diagnostic interval (DI) were measured. RESULTS: Data were available on 919 adult patients. Case-mix by cancer site was comparable to national cancer registry data. 45% were referred as an Urgent Suspected Cancer; 18% as an emergency. The median PCI and DI were 7 and 54 days, respectively (2 and 36 among NCDA cases overall). Of 633 patients (69%) with at least one recorded GP consultation, 25% (161/633) had three or more pre-referral consultations. 30% of patients underwent diagnostic imaging. CONCLUSIONS: Comparatively, median PCI and DI were longer (and use of diagnostic tests greater) for NEN than other cancers in the NCDA, but substantially shorter than previously reported.