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

## TL;DR

This study examines the diagnostic journey of adult patients with rare neuroendocrine neoplasms, finding delays and patterns in primary care.

## Contribution

The study provides population-based evidence on diagnostic delays and pathways for neuroendocrine neoplasms.

## Key findings

- Median primary care interval was 7 days and diagnostic interval was 54 days for NEN patients.
- 25% of patients had three or more pre-referral GP consultations.
- NENs had longer diagnostic intervals and more tests compared to other cancers in the audit.

## Abstract

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.

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.

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.

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.