# Earlier diagnosis of small intestine neuroendocrine tumours (SI‐NETs) through transformation of the South Wales NET service

## TL;DR

A transformed healthcare service in South Wales led to faster and more accurate diagnosis of small intestine neuroendocrine tumours.

## Contribution

The study provides empirical evidence on how a systematic transformation of a NET service can reduce diagnosis times and misdiagnosis rates.

## Key findings

- Diagnosis times for SI-NETs decreased from 12.5 to 5.2 months post-transformation.
- Misdiagnosis rates dropped from 40% to 25% following the service transformation.
- Computed tomography scans were significantly more effective than colonoscopy in identifying abnormalities.

## Abstract

Small intestine neuroendocrine tumours (SI‐NETs) are often diagnosed late with a UK median of 3 years and high misdiagnosis rates. Previous studies, largely based on patient surveys, offer little data on improving diagnosis. In 2017, the South Wales NET service underwent a nationally commissioned, systematic transformation, aiming to improve diagnosis through the development of a gastroenterology and surgical referral network, and education of these specialities. This study aims to assess the impact of the transformation on SI‐NET diagnosis times and misdiagnosis rates using accurate hospital data, along with the diagnostic routes and investigations used for SI‐NETs. We retrospectively analysed the hospital records of 224 patients diagnosed with SI‐NETs referred to the South Wales NET service (110 pre‐transformation and 114 post‐transformation). Following the service transformation, there was a significant reduction in diagnosis times from a median of 12.5–5.2 months (p < .05), at an earlier stage (cases with metastases reduced from 77% to 62%), and reduced misdiagnosis rates from 40% to 25%. Colonoscopy, used to investigate the presenting gastrointestinal symptoms in 42% of patients prior to diagnosis, identified an abnormality in only 28%, compared with 97% with computed tomography (CT) scans. A gastroenterology and surgical referral network across hospitals may improve diagnosis in SI‐NETs, leading to earlier detection and reducing misdiagnosis rates. Further exploration of GP interactions is needed. Caution is needed following negative colonoscopy in patients with persistent lower gastrointestinal symptoms as this could lead to missed SI‐NET diagnosis if further abdominal imaging is not undertaken.

Patients with small intestine neuroendocrine tumours (SI‐NETs) often face considerable delays in diagnosis. The South Wales NET service underwent a nationally commissioned, systematic transformation aimed at improving diagnosis through education and the development of referral networks. This study explores the diagnostic pathway and investigations undertaken for SI‐NETs using hospital data and investigates the potential impact of the transformation on diagnosis times and misdiagnosis rates.