Patient-reported experience of the impact and burden of neuroendocrine tumors: Oceania patient results from a large global survey

Abstract

Aim: Despite the considerable impact of neuroendocrine tumors (NETs) on patients’ lives, the patient journey is not well documented. The aim of this survey was to identify the impact and burden of NETs from the patient perspective. Methods: This was a self-reported global survey regarding NET knowledge/awareness, disease impact/management, interaction with medical teams, and desired improvements. One hundred thirty-eight patients (7% of the global study) in the Oceania region answered closed-ended questions using graded descriptors on their experience of living with NETs. Results: The personal lives of patients were negatively impacted by NETs, including overall energy levels (72%, 99/138), ..