ABSTRACT
The gastrointestinal tract and pancreas are common primary sites for neuroendocrine tumours (NETs). Patients often report a long duration of non-specific symptoms in the year prior to diagnosis. The aims of this study were, firstly, to establish pre-diagnosis patterns of symptoms, and secondly, to determine the time from onset of symptoms to NET diagnosis and understand the interaction with primary and secondary healthcare providers. A survey was designed on a web-based survey platform with the focus on patient symptoms prior to diagnosis and a screen for functional diarrhoea (Rome III criteria [C4]). A total of 303 responses were received. The median duration from the time of first symptoms to diagnosis was 36 months for small bowel NETs and 24 months for pancreatic NETs. Common first symptoms were pain (36%), flushing (24%), and diarrhoea (24%); 29% of small bowel NET respondents were given an initial diagnosis of irritable bowel syndrome. Dyspepsia was the second most common initial incorrect diagnosis. Respondents saw their GP 5 times over a median 18-month period for their symptoms; 31% of patients were diagnosed following unplanned emergency admission. In conclusion, this survey demonstrates a median time to diagnosis of 36 months for patients with small bowel NETs. Incorrect initial diagnosis appears to be very common, with a high number of attendances in primary and secondary care prior to a correct diagnosis being made. An earlier diagnosis may improve patients' quality of life and possible survival.
