Abstract
BackgroundThe diagnosis of neuroendocrine neoplasms (NENs) is often delayed. This first UK population-based epidemiological study of NENs compares outcomes with non-NENs to identify any inequalities.MethodsAge-standardised incidence rate (ASR), 1-year overall survival, hazard ratios and standardised mortality rates (SMRs) were calculated for all malignant NENs diagnosed 2013–2015 from UK national Public Health records. Comparison with non-NENs assessed 1-year overall survival (1YS) and association between diagnosis at stage IV and morphology.ResultsA total of 15,222 NENs were identified, with an ASR (2013–2015 combined) of 8.6 per 100,000 (95% CI 8.5–8.7); 4.6 per 100 000 (95% CI, 4.5–4.7) for gastro-entero-pancreatic (GEP) NENs. The 1YS was 75% (95% CI, 73.9–75.4) varying significantly by sex. Site and morphology were prognostic. NENs (predominantly small cell carcinomas) in the oesophagus, bladder, prostate, and female reproductive organs had a poorer outcome and were three times more likely to be diagnosed at stage IV than non-NENs.ConclusionAdvanced stage at diagnosis with significantly poorer outcomes of some NENs compared with non-NENs at the same anatomical site, highlight the need for improved access to specialist services and targeted service improvement.
Highlights
The diagnosis of neuroendocrine neoplasms (NENs) is often delayed
Study population A comprehensive population-based cohort study was undertaken for all persons diagnosed with NENs in the UK between 1 January 2013 and 31 December 2015 with follow-up to the week commencing 12 January 2017, using patient-level data collected by Public Health England National Cancer Registration and Analysis Service (PHE NCRAS), and pseudo-anonymised data from NHS National Services Scotland, Public Health Wales Welsh Cancer
Around 42% of oesophageal NENs were stage IV and grade 3 tumour pathology with a 1-year overall survival (1YS) probability of 22%; the predominant morphology at this site was small cell neuroendocrine carcinoma (Table 1)
Summary
The diagnosis of neuroendocrine neoplasms (NENs) is often delayed. This first UK population-based epidemiological study of NENs compares outcomes with non-NENs to identify any inequalities. NENs (predominantly small cell carcinomas) in the oesophagus, bladder, prostate, and female reproductive organs had a poorer outcome and were three times more likely to be diagnosed at stage IV than non-NENs. CONCLUSION: Advanced stage at diagnosis with significantly poorer outcomes of some NENs compared with non-NENs at the same anatomical site, highlight the need for improved access to specialist services and targeted service improvement. Registration in the ICD-O-3 (combined topology and morphology) coding system for cases diagnosed from 2013 onward,[3] and TNM staging of GEP-NENs from 20104 have allowed the first descriptive epidemiological study of NENs diagnosed in the UK, and the first analysis by TNM stage
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