Abstract Library

#3578 Optimal PLAnning of treatment and research of Neuroendocrine Tumors (NETs) in Australia: The PLANET registry and patient reported outcomes via PLANET App

Introduction: Neuroendocrine Neoplasms (NENs) are challenging to diagnose and manage due to their varied behaviour. Despite usually having an indolent course, they are often metastatic at diagnosis and can be associated with significant long-term morbidity and impaired quality-of-life (QOL). The PLANET registry was established to collate clinical data from tertiary NET centres and integrate these with real-time patient reported outcomes (PROs) enabled by the smartphone-based PLANET App.

Conference:

Presenting Author: Leyden S

Authors: Leyden S, Cummins M, Pavlakis N, Ransom D, Price T,

Keywords: data, PROMS, PROs, QOLs, real-world data,

#3340 Development and launch of first Australian accredited GP NET education course

Introduction: In 2018-19, NeuroEndocrine Cancer Australia (NECA) encouraged NET patients to nominate GP’s to fill in a 21-question survey. Questions ranged from diagnosis, initial symptoms, interactions with specialists, educational gaps & preferences. With only 5% of GPs suspecting a NET, these results provided the foundations for much needed education for GPs.

Conference: 18th Annual ENETS Concerence (2021)

Presenting Author: Cummins M

Authors: Cummins M, Leyden S,

Keywords: general practitioner, net education modules,

#2928 Survey of Challenges in Access to Diagnostics and Treatment for Neuroendocrine Tumour (NET) Patients (SCAN) – Assessment of Early Diagnosis

Introduction: SCAN measured global readiness to provide diagnostics and treatments for NET patients in terms of awareness, availability, quality and affordability.

Conference: 17th Annual ENETSConcerence (2020)

Presenting Author: Van Genechten D

Authors: Van Genechten D, McDonnell M, Rodien-Louw C, Dureja S, Leyden S,

Keywords: Neuroendocrine Tumours, Survey, Earlier diagnosis,

#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,

#2701 Assessing the Gaps in Experience and Knowledge of Australian Primary Health Care Professionals (GPs), in Treating and Caring for the Increasing Number of Australian Neuroendocrine Tumour (NET) Patients

Introduction: Conservatively,the incidence of NETs is 7 / 000' p.a, however,the prevalence of patients living with NETs is higher,40/000',making it the 2nd most common GI malignancy after colorectal cancer.Patients are living longer,however,with impaired quality of life.Management of debilitating symptoms such as diarrhoea,fatigue,anxiety,and flushing are complex and heterogenous.

Conference: 17th Annual ENETSConcerence (2020)

Presenting Author: Leyden S

Authors: Leyden S, Cummins M, Wakelin K,

Keywords: diagnosis, ongoing care, primary healthcare, NETs, quality of life, symptom management, NET symptoms,