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.

Age-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.

A 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.

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.

British journal of cancer. 2019 Oct 25 [Epub ahead of print]

Tracey S E Genus, Catherine Bouvier, Kwok F Wong, Rajaventhan Srirajaskanthan, Brian A Rous, Denis C Talbot, Juan W Valle, Mohid Khan, Neil Pearce, Mona Elshafie, Nicholas S Reed, Eileen Morgan, Andrew Deas, Ceri White, Dyfed Huws, John Ramage

Neuroendocrine Tumour Patients Foundation, Leamington Spa, UK. ., Neuroendocrine Tumour Patients Foundation, Leamington Spa, UK., National Cancer Registration and Analysis Service, Public Health England, Birmingham, UK., Department of Gastroenterology, King’s College Hospital, London, UK., National Cancer Registration and Analysis Service, Public Health England, Cambridge, UK., ENETS Centre of Excellence, Oxford University Hospitals Trust, Oxford, UK., Department of Medical Oncology, The Christie NHS Foundation Trust, Manchester, UK., Department of Gastroenterology, University Hospital of Wales, Cardiff & Vale University Hospital Board, Cardiff, UK., Department of Hepatobiliary and Pancreatic Surgery, University Hospital Southampton NHS Foundation Trust, Southampton, UK., Department of Cellular Pathology, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK., Beatson Oncology Centre, Gartnavel General Hospital, Glasgow, UK., Northern Ireland Cancer Registry, Centre for Public Health, Queen’s University Belfast, Belfast, UK., Information Services Division, NHS National Services Scotland, Edinburgh, UK., Welsh Cancer Intelligence & Surveillance Unit, Public Health Wales, Cardiff, UK.

X