NET Diagnosis
44% of neuroendocrine cancers patients were misdiagnosed at least once and 26% were incidentally diagnosed. Only 27% were diagnosed at the first attempt. The correct diagnosis was made by surgeons (46%), medical oncologists (40%), gastroenterologists (39.1%) and general practitioners (39.1%).
Most neuroendocrine cancers are misdiagnosed as gastritis, other digestive disorders, irritable bowel syndrome, or others. Yet it is not established with which conditions specific neuroendocrine cancer subtypes are being misdiagnosed.
CALL-TO-ACTION: Carry out a research project to gain evidence on the most common misdiagnoses of neuroendocrine cancer subtypes
There is a gap in evidence regarding the most common misdiagnoses of neuroendocrine cancer subtypes. Hence, this could be a research project to be developed on a national or international level. The present data from INCA SCAN Survey provides very valuable information on the percentage of misdiagnoses, but we suggest digging a bit deeper and identifying the main misdiagnoses. Here you can see a table that is lacking relevant information. Unfortunately, the data does not exist at this point.
In order to capture the evidence on misdiagnoses and make the case for better patient pathways through the diagnosis journey, we suggest conducting a survey of people already diagnosed with neuroendocrine cancer. The survey in this tool is just a starting point, we strongly advise you to work with patients and medical professionals to finalise the survey and ensure all the terminology is correct and understandable to those completing the survey. Furthermore, you can work with professional firms that help with the development of surveys to ensure the questions are useful for evidence purposes.
The outcome of this evidence-based research can bring awareness to HCPs about the problems of misdiagnoses of neuroendocrine cancers and help reduce the misdiagnosis rate. HCPs would gain a better understanding of what to look out for in terms of symptoms and potential misdiagnoses when examining new patients.
To ensure high-quality outcomes for this project, it is important to include HCP’s insights during the creation of the survey targeting the misdiagnosis. So that the evidence generated matches their concerns. We suggest engaging and collaborating with a medical society for this.
Make sure to share the resulting evidence with INCA, so that an international overview comparing regional differences can be generated.