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

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

Status

Completed

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT03840720

Enrollment

Registered

2019-02-15

Start date

2019-02-01

Completion date

2019-12-31

Last updated

2020-04-28

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Neuroendocrine Tumors

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

Interventions

None listed

Study design

Observational model

COHORT

Time perspective

CROSS_SECTIONAL

Eligibility

Sex/Gender

ALL

Age

18 Years to No maximum

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

Design outcomes

Primary

Measure	Time frame	Description
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

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

Countries

Sweden

Outcome results