Background:
Neuroendocrine Tumours (NETs) 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.
Aims:
The PLANET registry aims to provide real-world data on the incidence, natural history of NETs in Australia. The PLANET App aims to collect real time PROs to improve communication and management.
Methods:
NET patients are recruited by their clinician or NET Nurse into the PLANET Registry and a unique code is generated, which enables the patient to download the PLANET App. Validated QOL tools such as EORTC QLQ-C30, EORTC QLQ-GINET21, Bristol Stool Scale, vital signs and ECOG performance status are then completed over time. The frequency of data entry is guided by their clinician recommendation or more frequently at the patients’ discretion. This information is matched to PLANET biodata, disease characteristics, investigations, and outcomes. Initial feedback has been positive. A validated questionnaire will be the next focus of evaluation for ease of use and clinical benefit.
Results:
Verbal feedback from 106 patients, who have downloaded the app, as well as clinicians suggests that it facilitates communication between patients and clinicians, and information updates. The validated questionnaire will be the next focus of evaluation for ease of use and clinical benefit.
Conclusions:
A national NET Registry and companion patient App, to aid in clinical management is feasible. Next steps are to ensure this is scalable and sustainable to optimize patient outcomes.