Defining NETs and the INFO4NETs online platform

Defining the supportive care needs and psychological morbidity of patients with functioning versus non-functioning neuroendocrine tumours: a phase 1 trial of a nurse-led online and phone-based intervention.

Aim

The aim of the Defining NETs project was to identify the unique needs of the NET patient population and to develop an online and nurse-led phone-based intervention that will improve the availability of disease-specific information and provide supportive care that is tailored to the unique needs of the NET patient population.

Online information resources and support have been demonstrated to positively influence the well-being of people diagnosed with cancer. This has been explored in past literature for more common cancers; however, for rare cancers, such as neuroendocrine tumours (NETs), there are little to no support or resources available. Despite relatively good prognoses, the quality of life (QoL) of patients with NETs is significantly lower compared with samples of mixed cancer patients and the general population. Patients with NETs also typically report unclear and difficult pathways of disease management and treatment, given the heterogeneity of the diagnosis. There is a vital need to improve the availability of disease-specific information for this patient group and provide supportive care that is tailored to the unique needs of the NET patient population.

This was a multisite cohort with 3 phases, incorporating both quantitative and qualitative data collection.

  • Phase 1 is a mixed methods prospective cohort study of NET patients identifying differences in patient experiences and priority of needs between NET subgroups.
  • Phase 2 utilizes results from phase 1 to develop an online and nurse-led phone-based intervention.

Phase 3 is to pilot test and evaluate the intervention’s acceptability, appropriateness, and feasibility of the online platform INFO4NETs.

sponsor

Peter MacCallum Cancer Centre

funding

Victorian Cancer Agency

principal investigator

Dr Lisa Guccione

Email: [email protected]

project status

Completed

publications & presentations

Guccione L, Gough K, Drosdowsky A, Price T, Pavlakis N, Wyld D, Ransom D, Michael M, Schofield P. The unmet supportive care needs, quality of life, and care experiences of patients with functioning and non-functioning Neuroendocrine tumours (NETs) at early diagnosis. Patient Education and Counseling. 2021 May 11.

Guccione L, Gough K, Drosdowsky A, Fisher K, Price T, Pavlakis N, Khasraw M, Wyld D, Ransom D, Kong G, Rogers M. Defining the supportive care needs and psychological morbidity of patients with functioning versus nonfunctioning neuroendocrine tumors: protocol for a phase 1 trial of a nurse-led online and phone-based intervention. JMIR research protocols. 2019;8(12):e14361.

Oral Presentations

L. GUCCIONE (2018). Defining NETs Research Project Update. Proceedings of the Asia Pacific Neuroendocrine Tumour Society; Patient Symposium: Melbourne, Victoria, Australia.

contact details

Dr Lisa Guccione

Email: [email protected]