Poster Presentation 2025 National Cancer Survivorship Conference

Co-designing actionable solutions to gaps in advocacy, information and supportive care for people with metastatic breast cancer: the formation of Metastatic Breast Cancer Action Australia (MBC Action Australia), Australia’s first MBC-specific advocacy organisation (#101)

Andrea L Smith 1 2 , Jen Byles 2 , Jill Carland 2 , Melissa Hope 2 , Angela Jeffs 2 , Sharon Oakley 2 , Louise Sinclair 2 , Frances Boyle 1 2
  1. Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia
  2. Metastatic Breast Cancer Action Australia (MBC Action Australia), Sydney

Introduction

People with metastatic breast cancer (MBC) report feeling invisible within the breast cancer advocacy and support systems. Numerous systematic reviews report high unmet information and support needs.1,2,3,4

Aims

To identify gaps in advocacy, information and supportive care for people with MBC and to prioritise actionable solutions.

Methods

The co-designed 1.5-day workshop purposively recruited MBC consumer advocates. Inclusion criteria: >18 years, MBC diagnosis, actively involved in local/state/national advocacy. Participants completed a pre-workshop survey to gather perspectives on advocacy, information and support gaps and solutions. During the workshop, videos of interviews with people involved in MBC advocacy, information and support initiatives nationally/internationally were used to stimulate discussion. Three researchers provided content expertise on: (1) state of MBC supportive care interventions/research in Australia; and (2) existing priority areas for MBC advocacy, support and information identified nationally/internationally.

Results

Eleven people with MBC participated from NSW=7, NT=1, Qld =1, Tas=1, WA=1. Participants reported an urgent need for MBC-specific advocacy across multiple areas including epidemiological data, MBC-specific information, public awareness of MBC, access to clinical trials, MBC-focused research, improving survival, quality-of-life, and emotional support. Key information and support needs included easy-to-find MBC-specific information on financial impacts; work and carer; support for rural and remote communities; sexual wellbeing; psychosocial support; genomic/genetic testing; and clinical trials. Participants reported a need for better access to MBC-trained breast care nurses, MBC-specific support groups, and peer-to-peer support and improved awareness of online MBC-specific resources.

Conclusion

Participants concluded that greatest impact would be gained from creation of a dedicated national Australian MBC advocacy organisation that could:

  • set MBC priorities
  • identify/develop practical solutions to address priority needs
  • undertake advocacy and/or work with partners to design new services or adapt existing services.

As a direct result of the workshop, a cohort of participants launched Metastatic Breast Cancer Action Australia, Australia’s first MBC-specific advocacy organisation in October 2024.

  1. Hart, N. H. et al. Unmet supportive care needs of people with advanced cancer and their caregivers: a systematic scoping review. Crit Rev Oncol Hemat 176, 103728 (2022).
  2. Wang, T., Molassiotis, A., Chung, B.P.M., Tan, J.Y., 2018. Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review. BMC Palliat. Care 17 (1), 96.
  3. Tsatsou, I., Konstantinidis, T., Kalemikerakis, I., Adamakidou, T., Vlachou, E., Govina, O., 2021. Unmet supportive care needs of patients with hematological malignancies: a systematic review. Asia Pac. J. Oncol. Nurs. 8 (1), 5–17.
  4. Moghaddam, N., Coxon, H., Nabarro, S., Hardy, B., Cox, K., 2016. Unmet care needs in people living with advanced cancer: a systematic review. Support. Care Cancer 24 (8), 3609–3622.