Abstract Library

#3190 Getting Results - Patient experiences and preferences for communicating scan results in Australia

Introduction: Scans are integral to neuroendocrine tumor (NET) management. There are no guidelines regarding timing of scans and results communication from a patient (pt.) perspective.

Conference: 18th Annual ENETS Concerence (2021)

Presenting Author:

Authors: Gillespie J, Wakelin K, Cummins M, Golden K, Chan D,

Keywords: consumer, patient preferences, imaging, collaborative consumer research, communication, self-management, health service delivery,

#2713 The Economic Impact to Patients with Neuroendocrine Tumours

Introduction: The quality of life impact on patients with neuroendocrine tumours (NETs) and the economic burden on health systems are substantial. However, little is known about the economic burden to individual patients and families for medical out-of-pocket expenses and employment decisions.

Conference: 17th Annual ENETSConcerence (2020)

Presenting Author: Wyld D

Authors: Wyld D, Elliott T, Wakelin K, Leyden S, Leyden J,

Keywords: Financial Toxicity, Economic impact, Quality of Life, NETs,

#2686 Survivorship Care Model for Patients with Metastatic Neuroendocrine Tumors

Introduction: Neuroendocrine tumors(NET)are rare often indolent tumors. Approximately 22% of patients (pt's) present with metastatic disease at diagnosis and can live with metastatic disease for years. These pt's often don't identify as cancer survivors and don't meet the criteria for care in traditional survivorship clinics

Conference: 17th Annual ENETSConcerence (2020)

Presenting Author: Laffan A

Authors: Laffan A,

Keywords: neuroendocrine, survivorship, multidisciplinary, metastatic,

#2296 First Patient Survey about Tumor - Associated Fatigue in NEN

Introduction: Tumor-associated fatigue (TrF) is a debilitating condition occurring during the course of the tumor disease, and even ongoing after all tumor specific therapies are completed. The syndrome consists of chronic fatigue, sleep disturbances, severe pain, brain-fog and is underestimated by both, patients and doctors. Diagnosis is made according to the criteria by Cella (Cella 2001), although it is felt not to be sufficient.

Conference: 15th Annual ENETSConcerence (2018)

Presenting Author: Germany P

Authors: Banz S, Mellar K, Letsch A, Scheibenbogen C, Pavel M,

Keywords: Tumor related fatigue, online survey, support group, Quality of Life, ability of work,

#2078 Self-Reported Side Effects in Neuroendocrine Tumor (NET) Patients Prescribed Somatostatin Analogues – The Role for Specialist Dietitians and Nurses

Introduction: In practice, many patients with NETs report a change in symptoms after starting somatostatin analogues (SSA’s). Many health professionals and NET patient advocates have noticed that some of the side effects experienced by patients are more common than patient information literature suggests. It is therefore important to ask what and how severe experiences are, and compare to literature, to help raise awareness amongst NET health professionals.

Conference: 15th Annual ENETSConcerence (2018)

Presenting Author:

Authors: Whyand T, Davies P, Bouvier C,

Keywords: B12, SSA, Side effects, Fat soluble vitamins,