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Completed

NCT Number: NCT03840720

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

"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.

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Key information

Conditions

Neuroendocrine Tumors Neoplasms Neoplasms by Histologic Type Neoplasms, Germ Cell and Embryonal Neoplasms, Nerve Tissue Neuroectodermal Tumors

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Dept of Oncology

Gothenburg, Sweden

About this study

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

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Primary outcomes

  1. Initial symptoms

    Time frame: October 2019

    Mapping of patients initial symptoms and their time points through indepths interviews by design thinking methodology

  2. Health care actions

    Time frame: October 2019

    Mapping of corresponding health care actions and their time points regarding the investigations of symptoms

  3. 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

Secondary outcomes

  1. 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

Sponsors and collaborators

Lead sponsor

Vastra Gotaland Region

Other Gov

Collaborators

  • Novartis

Registry information

Official study title

The Patient's Journey - Assessing the Time to Final Diagnosis in Patients With Neuroendocrine Tumors (NET) in Western Sweden

Important dates

Study start
2019
Primary completion
2019
Study completion
2019
First posted
Feb 15, 2019
Registry last updated
Apr 28, 2020

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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