Abstract Library

#4222 Quali-NET: A prospective study on patient-reported quality of life in neuroendocrine neoplasms

Introduction: Neuroendocrine neoplasms of the lung (LNEN) or gastro-enteropancreatic tract (GEPNEN) are typically slow-growing, leading to longer overall survival, and resembling chronic illnesses. Therefore, focus on quality of life (QoL) is crucial. While brief studies have been done, comprehensive, long-term studies are needed.

Conference:

Presenting Author: Islam O

Authors: Islam O, Depauw L, van der Massen I, Simoens M, Galdermans D,

Keywords: GEP-NEN, LNEN, Quality of life, Longitudinal data,

#3912 Development of a mobile app for patients with neuroendocrine neoplasms: A collaborative project between United Kingdom NET Society and Neuroendocrine Tumour Patient Foundation

Introduction: Digital technology has an important role in the management of long term conditions.

Conference:

Presenting Author: Srirajaskanthan R

Authors: Srirajaskanthan R, Alaghband N, Ramage J, Solis B, Virk J,

Keywords: PROMs, Mobile Health, Neuroendocrine Tumor, Charity, patient focussed, bespoke, QoL,

#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,

#2901 Data is Power - Registry Experience at an ENETS COE

Introduction: The collection of anonymised data for patients with neuroendocrine tumours is necessary for the ongoing improvement of patient care and research/clinical trials.

Conference: 17th Annual ENETSConcerence (2020)

Presenting Author: Hogg A

Authors: Hogg A, Stell A, Marusic P, Sinnott R, Cummins M,

Keywords: PROMS, mobile phone app, registry,

#1169 Revalidation of QLQC30 and GINET21 Module in Patients with Neuroendocrine Tumors Using Online Questionnaire

Introduction: The GINET21 module measures PROMS for patients with NETs and was validated from 2006, since when there have been rapid changes in cancer therapeutics. Current module revalidation methodology a time and resource-intensive process, which may lag behind these treatment

Conference: 12th Annual ENETSConcerence (2015)

Presenting Author:

Authors: Kaupp-Roberts S, Gray D, O'Donnell K, Bouvier C, Ramage J,

Keywords: QoL PROM,