Oral Presentation 2025 Joint Meeting of the COSA ASM and IPOS Congress

‘They made me feel like I was at home’: Experiences of psychosocial care in the Australian Youth Cancer Service (124345)

Kit Bibby 1 , Ursula Sansom-Daly 2 3 4 , Michael Osborn 5 6 7 8 , Antoinette Anazodo 3 9 , Morgan Atkinson 5 , Allan Hayward 5 , Jeremy Lewin 10 11 , Fiona E.J. McDonald 1 12 , Andrew Murnane 10 , Tayhla Ryder 1 , Rick Walker 13 14 15 , Kate Thompson 10 16
  1. Canteen Australia, Newtown, NSW, Australia
  2. Behavioural Sciences Unit, University of New South Wales, Sydney, NSW, Australia
  3. Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia
  4. Sydney Youth Cancer Service, Prince of Wales Hospital, Randwick, NSW, Australia
  5. SA/NT Youth Cancer Service, Royal Adelaide Hospital, Adelaide, SA, Australia
  6. Department of Haematology and Oncology, Women's and Children's Hospital, North Adelaide, SA, Australia
  7. Adelaide Medical School, University of Adelaide, Adelaide, SA, Australia
  8. South Australian Comprehensive Cancer Network, Government of South Australia, Adelaide, SA, Australia
  9. School of Clinical Medicine, University of NSW, Sydney, NSW, Australia
  10. Victorian Adolescent and Young Adult Cancer Service, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia
  11. Sir Peter MacCallum Department of Oncology, University of Melbourne, Parkville, VIC, Australia
  12. Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia
  13. QLD Youth Cancer Service, Queensland Children's Hospital, South Brisbane, QLD, Australia
  14. Medical Oncology, Princess Alexandra Hospital, Woolloongabba, QLD, Australia
  15. School of Medicine, University of Queensland, Brisbane, QLD, Australia
  16. Department of Social Work, University of Melbourne, Parkville, VIC, Australia

OBJECTIVES

Adolescents and young adults (AYAs) aged 15-25 years with cancer have complex and unique psychosocial care needs that are not fully addressed within traditional adult or paediatric oncology settings. The Australian Youth Cancer Services (YCS) were established to address this gap by providing multidisciplinary, youth-responsive care across a network of >25 paediatric and adult hospitals. This study aimed to understand AYAs’ experiences of care to identify areas for service improvement.

METHOD

A cross-sectional survey was conducted between 2016-2022 with AYAs who had completed treatment at a YCS-affiliated hospital. The survey comprised 117 questions, evaluating participants’ experiences from diagnosis through treatment completion.

RESULTS

A total of 184 AYAs from all Australian states and territories completed the survey (39% response rate). The mean age was 22 years and 59% were female. The most common diagnoses were lymphoma (37%), sarcoma (20%), and germ-cell tumours (13%).

Most participants (96%) reported being satisfied or very satisfied with the overall support provided by the YCS. A high proportion (>85%) reported: having a family member present at diagnosis; being informed about their diagnosis in a caring manner; having a healthcare professional (HCP) they could contact any time; undertaking a psychosocial assessment about their coping and support needs; receiving ongoing emotional support; being able to talk with a HCP on their own; and trusting HCPs with personal information.

Areas identified for improvement (<70%) included enhancing access to entertainment/distraction resources and supporting continued engagement with education while in hospital. Qualitative suggestions included expanding the YCS to additional sites, extending support after treatment, and providing more opportunities to meet other AYAs.

CONCLUSION

AYAs reported high satisfaction with the psychosocial support they received, highlighting the value of multidisciplinary, youth-responsive care. Key areas for continuous service improvement were identified, and future service delivery should consider these insights when designing AYA care.