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

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

Clinical Trial Details — Status: Completed

Administrative data

• NCT number: NCT03840720
• Other study ID #: PR-1.0
• Status: Completed
• Start date: February 1, 2019
• Est. completion date: December 31, 2019

Study information

• Verified date: April 2020
• Source: Vastra Gotaland Region
• Contact: n/a
• Is FDA regulated: No
• Study type: Observational

Clinical Trial 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.

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

Recruitment information / eligibility

• Status: Completed
• Enrollment: 20
• Est. completion date: December 31, 2019
• Est. primary completion date: July 31, 2019
• Accepts healthy volunteers: No
• Gender: All
• Age group: 18 Years and older

Eligibility

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

Related Conditions & MeSH terms

• Neuroendocrine Tumors

Locations

Country	Name	City	State
Sweden	Dept of Oncology	Gothenburg

Sponsors (2)

Lead Sponsor	Collaborator
Vastra Gotaland Region	Novartis

Country where clinical trial is conducted

Sweden, 

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	Initial symptoms	Mapping of patients initial symptoms and their time points through indepths interviews by design thinking methodology	October 2019
Primary	Health care actions	Mapping of corresponding health care actions and their time points regarding the investigations of symptoms	October 2019
Primary	Reasons for a delayed diagnosis	Mapping of herdles and delays in reaching a final diagnosis through design thinking methodology analysing the patients symptoms and the corresponding Health care actions	October 2019
Secondary	Patients' efforts	Mapping of actions taken by the patient, trying to be diagnosed correctly, through indepths interviews by design thinking methodology	October 2019