NCT03840720

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.

Trial Health

87
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
20

participants targeted

Target at below P25 for all trials

Timeline
Completed

Started Feb 2019

Shorter than P25 for all trials

Geographic Reach
1 country

1 active site

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Start

First participant enrolled

February 1, 2019

Completed
11 days until next milestone

First Submitted

Initial submission to the registry

February 12, 2019

Completed
3 days until next milestone

First Posted

Study publicly available on registry

February 15, 2019

Completed
6 months until next milestone

Primary Completion

Last participant's last visit for primary outcome

July 31, 2019

Completed
5 months until next milestone

Study Completion

Last participant's last visit for all outcomes

December 31, 2019

Completed
Last Updated

April 28, 2020

Status Verified

April 1, 2020

Enrollment Period

6 months

First QC Date

February 12, 2019

Last Update Submit

April 27, 2020

Conditions

Neuroendocrine Tumors

Outcome Measures

Primary Outcomes (3)

  • Initial symptoms

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

    October 2019

  • Health care actions

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

    October 2019

  • 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 Outcomes (1)

  • Patients' efforts

    October 2019

Eligibility Criteria

Age18 Years+
Sexall
Healthy VolunteersNo
Age GroupsAdult (18-64), Older Adult (65+)
Sampling MethodNon-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

You may qualify if:

  • 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

You may not qualify if:

  • Not able to read and/or understand Swedish language
  • Dementia/memory loss
  • Performance status \>3

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

Dept of Oncology

Gothenburg, Sweden

Location

MeSH Terms

Conditions

Neuroendocrine Tumors

Condition Hierarchy (Ancestors)

Neuroectodermal TumorsNeoplasms, Germ Cell and EmbryonalNeoplasms by Histologic TypeNeoplasmsNeoplasms, Nerve Tissue

Study Officials

  • Andreas Hallqvist, MD, PhD

    Dept of Oncology, Sahlgrenska University Hospital, Gothenburg, Sweden

    PRINCIPAL INVESTIGATOR

Study Design

Study Type
observational
Observational Model
COHORT
Time Perspective
CROSS SECTIONAL
Sponsor Type
OTHER GOV
Responsible Party
PRINCIPAL INVESTIGATOR
PI Title
Principal investigator

Study Record Dates

First Submitted

February 12, 2019

First Posted

February 15, 2019

Study Start

February 1, 2019

Primary Completion

July 31, 2019

Study Completion

December 31, 2019

Last Updated

April 28, 2020

Record last verified: 2020-04

Locations

SE(1)