The Patient's Journey - the Time to Final Diagnosis in Patients With SiNET

Vastra Gotaland Region

Status: Completed

Conditions: Neuroendocrine Tumors

Study type: Observational

Funder types: Other; Industry

Identifiers

NCT03840720

PR-1.0

Details and patient eligibility

About

"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.

Full description

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

Enrollment: 20 patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• Patients living in Western Sweden
• > 18 years of age
• Performance status 0-3
• Expected remaining survival of > 6 months
• Diagnosed with a small intestinal neuroendocrine tumor during 2016-2018

Exclusion criteria

• Not able to read and/or understand Swedish language
• Dementia/memory loss
• Performance status >3