Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2024

Equitable access to support groups for people with metastatic cancer: Do we have the evidence to support their implementation? And if so, what factors are impacting on their adoption and roll-out across Australia? (#333)

Andrea L Smith 1 2 , Frances Boyle 3 , Michele Daly 4 , Fiona Dinner 5 , Marika Franklin 2 , Melanie Hamilton 6 , Pia Hirsch 7 , Kim Hobbs 8 , Laura Kirsten 9 , Kitty-Jean Laginha 2 , Stephanie Lentern 2 , Sophie Lewis 2 , Zhicheng Li 10 , Grace Mackie 3 , Carolyn Mazariego 11 , Ros Chao 12 , Mary O'Brien 13 , Amanda O'Reilly 14 , Jasmine Ekaterina Persson 3 , Natalie Taylor 11 , Lisa Tobin 15
  1. The Daffodil Centre, University of Sydney, Sydney, NSW, Australia
  2. University of Sydney, Sydney, NSW, Australia
  3. School of Medicine, University of Sydney, Sydney, NSW, Australia
  4. Consumer Advisory Panel, Cancer Institute, Sydney, NSW, Australia
  5. Consumer representative, Melbourne, Victoria, Australia
  6. University of Sydney, Camperdown, NSW, Australia
  7. Advanced Breast Cancer Group, Brisbane, QLD, Australia
  8. Westmead Centre for Gynaecological Cancers, Sydney, NSW, Australia
  9. Nepean Cancer Care Centre, Sydney, NSW, Australia
  10. Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia
  11. Faculty of Medicine and Health, University of New South Wales, Sydney, NSW, Australia
  12. Support group facilitator, Melbourne, Vic, Australia
  13. Advanced Breast Cancer Group, Brisbane, Qld, Australia
  14. Support group facilitator, Sydney, NSW, Australia
  15. Breast Cancer Network Australia, Melbourne, Vic, Australia

Aim: To understand the value of metastatic support groups, starting with metastatic breast cancer (MBC), and factors influencing their adoption, implementation and sustainment including system/organisational factors.

Methods: We performed a scoping review of impact and implementation of metastatic support groups. This informed our interviews with people with MBC, male partners, group facilitators and key informants. Data were analysed thematically and discussed by project team, including three consumers. Implementation determinants were identified using Consolidated Framework for Implementation Research.

Results: The review (19 studies: 8 RCTs; 7 qualitative; 2 cohort; 2 mixed-methods) identified evidence of effectiveness of metastatic support groups, particularly psychosocial outcomes. Eighty-three participants were interviewed (28 patients; 16 partners; 20 support group facilitators; 19 key informants). Cross-cutting themes included importance of metastatic support groups and professional facilitation given high MBC patient/partner unmet needs and unique survivorship challenges. MBC patient/partner and facilitator data indicated support groups provided much-needed connection to MBC community, safe space for sharing experiential knowledge and having open conversations. Key implementation challenges included suitably skilled group facilitators, access to clinical supervision, and sustainable funding models. Key informant data indicated systemic challenges including lack of national framework to inform standards, model-of-care and delivery of groups. The ‘corporatisation’ of many not-for-profits, the increasingly risk-averse culture, insecure funding streams, and need to demonstrate impact has seen a shift from delivery of face-to-face services such as support groups to mass-reach, online services (e.g. helplines, online forums) which are more easily evaluated and reported as impactful.

Conclusion: There was strong agreement across datasets that metastatic support groups, particularly face-to-face groups, were of value and that they should be led by trained professional facilitators. Equitable access to metastatic support groups will require a national framework/model-of-care and cooperation among stakeholders to utilise their expertise in metastatic cancer, support group leader training, and supportive care delivery.