Aims: To develop and deliver a Neuroendocrine Tumour (NETs) Education program to build awareness and better meet the needs advocacy and support needs of those affected by NETS.
Methods: NeuroEndocrine Cancer Australia (NECA) distributed information on the project to their networks including online peer and support groups. Individuals affected by NETs were invited to provide input into the structure, benefits and content of an online group program through participating in a pre-program survey. 30 surveys were completed. All respondents were invited to participate in one of two pilot programs. Program curriculum was developed and facilitated by NECA nurses and Cancer Council Victoria. Recruitment was through NECA networks.
The program included – What are NETs, Carcinoid Syndrome, Treatment, Navigating the system, Exercise, Nutrition and Finances. Time was built into the agenda for participants to share personal stories with a focus on advocacy, coping strategies and wellness self-care tips. Each session was supported with topic resources and recorded for absent participants. The program was delivered via Zoom weekly over four weeks.
Results: There were 40 participants who attended the two pilot programs. Self-reported participant wellbeing pre- and post- programs analysis was done. Before the program, less than 50% of the participants reported they were satisfied with their overall wellbeing. After the program was delivered, 80% of participants self-reported that they were completely or somewhat satisfied with their ability to advocate for their health and wellbeing, to cope with the challenges of living with NETs, and the physical and emotional effects of their cancer and treatments.
Conclusions: Feedback indicated that the program has a good balance between information and interaction, excellent guest speakers, experienced facilitators, was paced nicely and without information overload. The program will be launched nationally in November 2022 with an aim to run twice yearly recruiting 20 participants each program.