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Recruiting NCT05268783

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

No phase Interventional Quality of Life

For patients and families

In plain language

An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.

What is being studied
The protocol lists: EORTC QLQ-C30, EORTC QLQ-GI.NET21, Satisfaction survey.
Who it may be relevant to
Registry conditions: Quality of Life. Basic parameters: from 18 years · All.
What needs checking
Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
Where it takes place
Belgium
Next step
Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →

Unsure about the terms? Read our patient guide →

Overview

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.

Interventions

  • Procedure EORTC QLQ-C30
    Quality of life questionnaire that has to be completed every 6 months
  • Procedure EORTC QLQ-GI.NET21
    Quality of life questionnaire that has to be completed every 6 months
  • Procedure Satisfaction survey
    Questionnaire regarding satisfaction of care that has to be completed on Day 1.

Primary outcome measures

  • Quality of life measurement with QLQ-C30 questionnaire [Time frame: 5 years]
  • Quality of life measurement with QLQ-GI.NET21 questionnaire [Time frame: 5 years]
Secondary outcome measures (1)
  • Quality of care measurement with satisfaction survey [Time frame: 5 years]

Eligibility criteria

Inclusion criteria

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

Exclusion criteria

  • Patients who do not have an email address

Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.

Healthy volunteers: No

Study design

Allocation
N/A
Model
Single group
Masking
Open label
Primary purpose
Treatment

Study locations

Belgium · 7 centers
  • AZ Klina — Brasschaat
  • AZ Monica — Deurne
  • Antwerp University Hospital — Edegem
  • AZ Rivierenland — Rumst
  • VITAZ — Sint-Niklaas
  • ZNA — Antwerp
  • GZA — Antwerp

Identifiers

NCT: NCT05268783 · Quali-NET

Primary sources (government registries)

View this study on ClinicalTrials.gov ↗