Background: Transformation of the South Wales NET service in late 2017 introduced new specialised staff, gastroenterology-led clinics and MDTs with a particular emphasis on educating referring specialties on NETs. Data has shown patient experience, satisfaction rates, quality of life and gastrointestinal symptom scores have all improved. This study aims to describe findings from new NET service data for: referrals into the service, diagnosis times after symptoms, and initial survival rates, comparing with the old service.
Methods: Data was prospectively collected for 301 patients within databases and clinical reports. Basic patient characteristics were recorded along with: presenting symptoms, routes of diagnosis (emergency admission, incidental finding, long-standing symptoms), symptom-onset to diagnosis times and symptoms onset to referral times (and more) for midgut and pancreatic new NET patients. Old service had similar data collection methods.
Findings: Surgery 55.3%(156) and gastroenterology 30.1%(85) formed the largest referring specialities from 282 new service patients. The largest surgical sub-speciality group was GI 54.5%(85) with colorectal surgery 77.6%(66). These findings are consistent with the nature of NET diagnosis. Out of 125 NET patients (midgut , pancreatic , paraganglioma ) (G1 53.2%, G2 44.0%, G3 2.8%) 41.1% presented with long-standing symptoms and 35.5%(44) were diagnosed incidentally. Crucially, results showed >=50% reduction in symptom onset to diagnosis times between the new service (median: 9 months, range: 089 months) and old service (median: 4 months, range: 1180 months) (P<0.001). Survival times from the old service: median 45 months, range: 1236 months, whilst new service data remains immature (20 deaths in 2 years).
Conclusion: Alongside improvements in patient experience and quality of life, for a tumour-type often characterised by delayed diagnosis, education of the referring specialities, namely gastroenterology and surgery, has shown markedly improved diagnosis times.This Indicates the benefits of wider education and awareness of NETs amongst medical and surgical teams across Wales, together with improved communication through the whole cancer network and MDT. There are limitations in comparing heterogeneous groups for survival analysis but work continues on a national level as survival data matures.
02 Dec 2019
UK and Ireland Neuroendocrine Tumour Society