Abstract Library

#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,

#3642 GP-patient interactions and coding of neuroendocrine tumors (NETs) in primary care records

Introduction: Diagnostic delays in NETs are common with improved diagnosis times recently shown in Wales. Although studies have explored GP visits, these are based on patient surveys with recall bias and no exploration of GP coded data.

Conference:

Presenting Author: Olive S

Authors: Olive S, Gould H, Navaratnam J, Khan M,

Keywords: diagnosis, GP, primary care, coding,

#3515 PRESTO 2: An international patient survey to evaluate impact of injection and delivery system on local pain when administering somatostatin analogue (SSA) therapy

Introduction: Long-acting (LA) SSA therapy is a common long-term treatment for NETs, but real-world data on patients’ injection experience using the latest LA SSA designs/formulations are limited.

Conference:

Presenting Author: O'Toole D

Authors: O'Toole D, Prebtani A, Webb S, Houchard A, Gueguen D,

Keywords: acromegaly, injection site pain, lanreotide autogel/depot, neuroendocrine tumor, octreotide long-acting release syringe, patient survey,

#3500 HomeLAN: An international online survey to assess satisfaction with injection experience of patients with neuroendocrine tumors (NETs) enrolled in lanreotide autogel (LAN) Patient Support Programmes (PSPs)

Introduction: LAN is a long-term treatment for NETs, delivered in a ready-to-use syringe by monthly, deep subcutaneous injection. LAN PSPs aim to assist patients receiving their treatment at home, reducing both travel burden and the current risk of COVID-19 exposure. Furthermore, after training patients on stable dose can administer LAN independently (self or non-healthcare professional), where approved.

Conference:

Presenting Author: Hernando J

Authors: Hernando J, Kolarova T, Verslype C, Kaltsas G, Houchard A,

Keywords: neuroendocrine tumor, patient satisfaction, patient support programme, patient survey, lanreotide autogel,

#2789 The Patient Journey – Experience from Symptoms to Diagnosis among Patients with Small Intestinal Neuroendocrine Tumours (SINET)

Introduction: Patients with SINET often have diffuse symptoms delaying diagnosis. In a patient survey it was observed that 1/3 of NET patients had a time span to diagnosis of > 5 years, with a median of 52 months. Here we assess the patients’ experience during that time period.

Conference: 17th Annual ENETSConcerence (2020)

Presenting Author: Holgersson K

Authors: Holgersson K, Ståhl E, Nilsson M, Grauers B, Mårtensson-Djäken E,

Keywords: SINET, patients' experience, interview,