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

Antwerp University Hospital (UZA)

Status: Enrolling

Conditions: Quality of Life

Treatments: Procedure: EORTC QLQ-GI.NET21; Procedure: EORTC QLQ-C30; Procedure: Satisfaction survey

Study type: Interventional

Funder types: Other

Identifiers

NCT05268783

Quali-NET

Details and patient eligibility

About

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.

Enrollment: 1,000 estimated patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

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

Exclusion criteria

• Patients who do not have an email address

Trial design

Primary purpose: Treatment

Allocation: N/A

Interventional model: Single Group Assignment

Masking: None (Open label)

---

1,000 participants in 1 patient group

NEN patients

Experimental group

Description:

EORTC QLQ-C30, EORTC QLQ-GI.NET21 and satisfaction survey

Treatment:

Procedure: EORTC QLQ-GI.NET21

Procedure: Satisfaction survey

Procedure: EORTC QLQ-C30