Patient-reported Outcomes in Neuroendocrine Neoplasms: a Prospective Quality of Life and Quality of Care Study Within NETwerk

Not Applicable

Recruiting

• Conditions: Quality of Life

• Registration Number: NCT05268783
• Lead Sponsor: University Hospital, Antwerp

Brief Summary

Neuroendocrine tumors (NET) are rare tumors that require specific diagnosis and treatment. Therefore, this poses a challenge for clinical practice. Diagnosis and treatment can be optimized when physician specialists and other healthcare providers, across various hospitals, join forces to provide patients the best care. Based on this idea, a hospital network called NETwerk was set up. The following hospitals are part of this network: University Hospital Antwerp, VITAZ, AZ Monica, AZ Voorkempen, AZ Klina, Gasthuiszusters Antwerpen, Ziekenhuis Netwerk Antwerpen and AZ Rivierenland. In this NETwerk, patients with a neuroendocrine tumor or patients suspected with a neuroendocrine tumor are discussed with the specialists and treated.The aim of this study is to map the quality of life of NET patients within NETwerk in order to optimize the quality of care. Throughout the diagnosis, the treatment process and the follow-up, the patient will be asked to fill out three questionnaires (QLQ-C30, QLQ-GI.NET21 and a satisfaction survey). These questionnaires will be filled out every six months at home. Patients will be asked to complete these questionnaires over a period of five years.

Detailed Description

Not available

Study Timeline

• Study Start: 2018-11-05
• Status Verified: 2022-02
• Study First Submitted: 2022-02-24
• Study First Submitted QC: 2022-02-24
• Study First Posted: 2022-03-07
• Last Update Submitted: 2022-03-08
• Last Update Posted: 2022-03-24
• Primary Completion: 2029-12-31
• Study Completion: 2029-12-31

Recruitment & Eligibility

• Status: RECRUITING
• Sex: All
• Target Recruitment: 1000

Inclusion Criteria

• NEN patient
• 18 years or older
• Patient should appear in Oncobase

Exclusion Criteria

• Patients who do not have an email address

Study & Design

• Study Type: INTERVENTIONAL
• Study Design: SINGLE_GROUP

Primary Outcome Measures

Name	Time	Method
Quality of life measurement with QLQ-GI.NET21 questionnaire	5 years	Quality of life measurement with QLQ-GI.NET21 questionnaire
Quality of life measurement with QLQ-C30 questionnaire	5 years	Quality of life measurement with QLQ-C30 questionnaire

Secondary Outcome Measures

Name	Time	Method
Quality of care measurement with satisfaction survey	5 years	Quality of care measurement with satisfaction survey

Trial Locations

Locations (7)

AZ Klina; 🇧🇪 Brasschaat, Antwerp, Belgium

AZ Monica; 🇧🇪 Deurne, Antwerp, Belgium

Antwerp University Hospital; 🇧🇪 Edegem, Antwerp, Belgium

AZ Rivierenland; 🇧🇪 Rumst, Antwerp, Belgium

VITAZ; 🇧🇪 Sint-Niklaas, East-Flanders, Belgium

ZNA; 🇧🇪 Antwerp, Belgium

GZA; 🇧🇪 Antwerp, Belgium