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

Completed

• Conditions: Neuroendocrine Tumors

• Registration Number: NCT03840720
• Lead Sponsor: Vastra Gotaland Region

Brief Summary

"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.

Detailed 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

Study Timeline

• Study Start: 2019-02-01
• Study First Submitted: 2019-02-12
• Study First Submitted QC: 2019-02-12
• Study First Posted: 2019-02-15
• Primary Completion: 2019-07-31
• Study Completion: 2019-12-31
• Status Verified: 2020-04
• Last Update Submitted: 2020-04-27
• Last Update Posted: 2020-04-28

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 20

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

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Initial symptoms	October 2019	Mapping of patients initial symptoms and their time points through indepths interviews by design thinking methodology
Health care actions	October 2019	Mapping of corresponding health care actions and their time points regarding the investigations of symptoms
Reasons for a delayed diagnosis	October 2019	Mapping of herdles and delays in reaching a final diagnosis through design thinking methodology analysing the patients symptoms and the corresponding Health care actions

Secondary Outcome Measures

Name	Time	Method
Patients' efforts	October 2019	Mapping of actions taken by the patient, trying to be diagnosed correctly, through indepths interviews by design thinking methodology

Trial Locations

Locations (1)

Dept of Oncology; 🇸🇪 Gothenburg, Sweden