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Endocrine Abstracts (2021) 80 P6 | DOI: 10.1530/endoabs.80.P6

1Cardiff University, Cardiff, United Kingdom; 2Surgical Directorate, Cardiff & Vale University Health Board, Cardiff, United Kingdom; 3Department of Gastroenterology, Cardiff & Vale University Health Board, Cardiff, United Kingdom


Background: Neuroendocrine tumours (NETs) are heterogeneous cancers with varied survival, arising mainly from the gastroenteropancreatic tract. Delayed diagnosis and mislabelling are widely recognised internationally in midgut NETs with little data describing how to improve diagnosis times. In 2017, transformation of the South Wales NET Service included a change to a gastroenterology-led service model alongside education and forming working relationships with gastroenterologists and surgeons in Wales.

Objective: To evaluate times and routes of diagnosis of GEP-NETs in South Wales.

Methods: This was a retrospective study of accurate hospital records for 224 patients with midgut NETs (and unknown primary, likely to be midgut). There were 110 patients pre-transformation and 114 post-transformation.

Results: Median diagnosis time from symptom onset was 13 months pre-transformation, 5.6 months post-transformation (P < 0.001). Diagnostic delay over 3 years was 13% pre-transformation, 6% post-transformation. Metastatic disease at diagnosis or soon after reduced from 70% to 55%. 40% of patients were mislabelled as IBS, or other pre-transformation; reducing to 25% post-transformation. 25% were discharged from secondary care prior to re-referral and diagnosis; reducing to 19% after 2017. 82% of patients were diagnosed by gastroenterology or GI surgical specialities. 46% of those presenting as an emergency had chronic symptoms; 47% of these were already being investigated prior to the emergency admission. Symptoms included abdominal pain, diarrhoea, vomiting, flushing and weight loss. 13% of patients were asymptomatic and diagnosed as an incidental finding. Often this was during investigations for other cancers. Only 20% of patients who had colonoscopy as a first line investigation had an abnormality found whereas 96% of cases were diagnosed on abnormalities found on CT.

Conclusion: Diagnosis times of midgut NETs have improved across South Wales. This is likely to be a result of the change in service model, education of gastroenterologists and surgical teams in Wales, increased awareness and efficient use of investigations. Diagnosis rates improve with imaging rather than colonoscopy as first line investigation.

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