Study on Quality of Life and Care for Adults with Neuroendocrine Tumors in the NETwerk Hospital Network

What this Trial Is About

Neuroendocrine tumors NET are rare and challenging to diagnose and treat, requiring specialized care. This study is focused on patients with NET or those suspected of having NET within a hospital network called NETwerk, involving several hospitals working together to improve patient care. The main goal is to understand and improve the quality of life and quality of care for these patients over time. Participants in this study will be asked to complete three questionnaires the EORTC QLQ-C30 and EORTC QLQ-GI.NET21, which assess quality of life, and a satisfaction survey about their care experience. These questionnaires are completed at home every six months, with the satisfaction survey completed at the start of the study. This process continues over a five-year period. During the study, patients will regularly provide information through these questionnaires to help researchers evaluate their quality of life and satisfaction with care. The primary outcomes measured are the quality of life scores from the QLQ-C30 and QLQ-GI.NET21 questionnaires over five years, while the satisfaction survey evaluates quality of care. This long-term follow-up helps monitor patients experiences and care outcomes within the NETwerk.

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