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

Study Overview
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Brief Summary
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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.

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

Conditions
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Quality of Life

Intervention / Treatment
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* Procedure: EORTC QLQ-C30
* Procedure: EORTC QLQ-GI.NET21
* Procedure: Satisfaction survey


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: NEN patient 18 years or older Patient should appear in Oncobase Exclusion Criteria: Patients who do not have an email address

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Design Details

Primary Purpose: Treatment
Intervention Model: Single Group Assignment
Masking: None (Open Label)


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Experimental: NEN patients<br>EORTC QLQ-C30, EORTC QLQ-GI.NET21 and satisfaction survey | Procedure: EORTC QLQ-C30<br>* Quality of life questionnaire that has to be completed every 6 months<br>Procedure: EORTC QLQ-GI.NET21<br>* Quality of life questionnaire that has to be completed every 6 months<br>Procedure: Satisfaction survey<br>* Questionnaire regarding satisfaction of care that has to be completed on Day 1.<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Quality of life measurement with QLQ-C30 questionnaire | Quality of life measurement with QLQ-C30 questionnaire | 5 years | 
| Quality of life measurement with QLQ-GI.NET21 questionnaire | Quality of life measurement with QLQ-GI.NET21 questionnaire | 5 years | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Quality of care measurement with satisfaction survey | Quality of care measurement with satisfaction survey | 5 years | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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neuroendocrine neoplasms