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

April 27, 2020 updated by: Andreas Hallqvist, Vastra Gotaland Region

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.

Study Overview

Status

Completed

Conditions

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 Type

Observational

Enrollment (Actual)

20

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

  • Sweden
      • Gothenburg, Sweden
        • Dept of Oncology

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

18 years and older (Adult, Older Adult)

Accepts Healthy Volunteers

No

Genders Eligible for Study

All

Sampling Method

Non-Probability Sample

Study Population

Patients in Western Sweden, > 18 years of age that has been diagnosed with a small intestinal neuroendocrine tumor during 2016-2018

Description

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 Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

  • Observational Models: Cohort
  • Time Perspectives: Cross-Sectional

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Initial symptoms
Time Frame: October 2019
Mapping of patients initial symptoms and their time points through indepths interviews by design thinking methodology
October 2019
Health care actions
Time Frame: October 2019
Mapping of corresponding health care actions and their time points regarding the investigations of symptoms
October 2019
Reasons for a delayed diagnosis
Time Frame: 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
October 2019

Secondary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Patients' efforts
Time Frame: October 2019
Mapping of actions taken by the patient, trying to be diagnosed correctly, through indepths interviews by design thinking methodology
October 2019

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

Vastra Gotaland Region

Collaborators

Novartis

Investigators

  • Principal Investigator: Andreas Hallqvist, MD, PhD, Dept of Oncology, Sahlgrenska University Hospital, Gothenburg, Sweden

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

February 1, 2019

Primary Completion (Actual)

July 31, 2019

Study Completion (Actual)

December 31, 2019

Study Registration Dates

First Submitted

February 12, 2019

First Submitted That Met QC Criteria

February 12, 2019

First Posted (Actual)

February 15, 2019

Study Record Updates

Last Update Posted (Actual)

April 28, 2020

Last Update Submitted That Met QC Criteria

April 27, 2020

Last Verified

April 1, 2020

More Information

Terms related to this study

Additional Relevant MeSH Terms

Other Study ID Numbers

  • PR-1.0

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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