Neuroendocrine Tumors Clinical Trial
Official title:
The Patient's Journey - Assessing the Time to Final Diagnosis in Patients With Neuroendocrine Tumors (NET) in Western Sweden
"The patient's journey" is an interview based study assessing the patients' experience from the first symptoms to a final diagnosis focusing on patients with small intestinal neuroendocrine tumors.
The project focus on patients with small intestinal neuroendocrine tumors (SiNET's) with an
incidence of 1-2/100 000 yearly. The primary tumor(s) are often small and symptoms usually
arise when the disease has become metastatic with hormonal symptoms and/or symptoms due to
local growth. As the tumors grow slowly and the symptoms in many cases are rather diffuse and
develops gradually over a long time period there is often a long delay from onset to a final
diagnosis both depending on "patient's delay" and "doctor's delay" The aim of the current
project is to map and analyze the patient's journey from the first appearance of symptoms to
the time point of a final diagnosis and to try to identify factors contributing to a delayed
process.
The method is interview based and the interviews will be analyzed through the Design Thinking
Methodology
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