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. 2018 Nov 16;18(1):1122.
doi: 10.1186/s12885-018-5057-3.

Delays and routes to diagnosis of neuroendocrine tumours

Ron Basuroy  1 , Catherine Bouvier  2 , John Keith Ramage  3 , Maia Sissons  2 , Raj Srirajaskanthan  4   5
Affiliations

Delays and routes to diagnosis of neuroendocrine tumours

Ron Basuroy et al. BMC Cancer. .

Abstract

Background: Neuroendocrine tumours are uncommon tumours; there is often a long period between the onset of symptoms and diagnosis. This study aims to address the symptoms prior to diagnosis of people with known neuroendocrine tumours and also the involvement of healthcare providers prior to the diagnosis.

Methods: A web based survey was designed to cover two broad areas of patient symptoms and healthcare interactions prior to diagnosis. This was tested and adapted by patient and clinician input prior to distribution via Survey Monkey.

Results: The results demonstrated a median time from first symptom to diagnosis of 53.8 months. The most frequent initial symptoms were of pain, change in bowel habit and fatigue. 31% of respondents noted weight loss prior to diagnosis. 80% of respondents visited their GP regarding the symptoms a median of 11 times. 58% of respondents were referred to secondary care where they were seen a median 3 times. 30% presented acutely to A&E and this led to their diagnosis.

Conclusion: In conclusion, there is a long time from onset of symptoms to diagnosis in all types of NETs. This is despite many respondents having alarm symptoms at diagnosis. Further education and awareness regarding malignancy may help with earlier diagnosis.

Keywords: Delay; Diagnosis and pancreas; Gastrointestinal; Lung; Neuroendocrine tumour; Symptoms.

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Conflict of interest statement

Authors’ information

JKR: Professor of gastroenterology; ENETS executive committee member; Chairman of UKINETS. RS: Consultant gastroenterologist and member of UKINETS.

Ethics approval and consent to participate

Not applicable. This was an online anonymous survey and following completing the HRA decision aids tool an online form, it confirmed that NHS REC approval was not required.

Consent for publication

Not applicable

Competing interests

The authors declare that they have no competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Figures

Fig. 1
Fig. 1
Illustrates the frequency of the seven main primary symptoms reported by respondents dependent on the site of primary tumour
See this image and copyright information in PMC

References

    1. Yao JC, et al. One hundred years after ‘carcinoid’: epidemiology of and prognostic factors for neuroendocrine tumors in 35,825 cases in the United States. J Clin Oncol. 2008;26(18):3063–3072. doi: 10.1200/JCO.2007.15.4377. - DOI - PubMed
    1. Topping Megan, Gray Debra, Friend Elizabeth, Davies Albert, Ramage John K. A Systematic Review of Symptoms and Quality of Life Issues in Pancreatic Neuroendocrine Tumours. Neuroendocrinology. 2017;105(3):320–330. doi: 10.1159/000475793. - DOI - PubMed
    1. Basuroy R, Srirajaskanthan R, Ramage JK. Neuroendocrine Tumors. Gastroenterol Clin N Am. 2016;45(3):487–507. doi: 10.1016/j.gtc.2016.04.007. - DOI - PubMed
    1. Modlin IM, et al. Gastroenteropancreatic neuroendocrine tumours. Lancet Oncol. 2008;9(1):61–72. doi: 10.1016/S1470-2045(07)70410-2. - DOI - PubMed
    1. Ramage JK, et al. Guidelines for the management of gastroenteropancreatic neuroendocrine (including carcinoid) tumours (NETs) Gut. 2012;61(1):6–32. doi: 10.1136/gutjnl-2011-300831. - DOI - PMC - PubMed

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