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

Transforming Care: A Stakeholder-Informed Framework for Adolescent and Young Adult (AYA) Palliative Care Delivery (125915)

Tracey Mander 1 , Naomi Katz 2 , Ilana Berger 1 , Mark Boughey 3 , Jill Carter 4 , Jenny Hynson 5 , Jo Kelly 6 , Brian Le 2 , Michele Yeo 7 , Jeremy Lewin 1 8 9
  1. Victorian Adolescent and Young Adult Cancer Service, Melbourne, VIC, Australia
  2. Parkville Integrated Palliative Care Service, Melbourne, VIC, Australia
  3. St Vincent's Hospital, Melbourne, VIC, Australia
  4. Community palliative Care, Barwon Health, Geelong, VIC, Australia
  5. Victorian Paediatric Palliative Care Program, Royal Children's Hospital, Melbourne, VIC, Australia
  6. Palliative Care South East, Melbourne, Vic, Australia
  7. Department of Adolescent Medicine, Royal Children's Hospital, Melbourne, VIC, Australia
  8. University of Melbourne, Melbourne, Australia
  9. Peter MacCallum Cancer Centre, Melbourne, Australia

Background: Adolescents and young adults (AYA) with life-limiting cancer represent a unique cohort within palliative care, as their illness coincides with crucial developmental milestones across physical, emotional, psychological, and social domains. In 2022, the Victorian Department of Health commissioned the Victorian AYA Palliative Care Framework. 

Methods:  A steering committee guided a multi-faceted methodology, comprising: a scoping literature review of AYA palliative care; stakeholder consultations with over 50 individuals involving consumers and health sector representatives; and review of relevant policies, legislation, and frameworks. Thematic analysis of the data informed the Framework's vision and strategic priorities.

Results: Four strategic priorities were identified:

  1. Care Delivery is Young Person-Centred and Family Inclusive: Patient-centred and family-inclusive care actively involves young people in their care, respects and responds to preferences, needs and values of young people, families and carers, ensuring that their voices are integral to the decision-making process. 
  2. Access to Multidisciplinary Care by Skilled Health Professionals: A capable and skilled multidisciplinary workforce is essential for providing age-appropriate palliative care.  Training to understand and address the unique challenges young people face in palliative contexts is vital.
  3. Well-Coordinated and Integrated Services: Services collaborate effectively to identify, co-ordinate and respond to the individual needs and circumstances of young people, their families and carers, including seamless transitions between different care settings.  
  4. Research and Data to Drive Improvements: High quality, evidence-informed care relies on data driven improvements.  Ongoing research and evaluation are critical to assess the effectiveness of interventions, promote best practice and enhance quality of palliative care for young people.

Conclusion: This Framework outlines the vision and direction of AYA palliative care within Victoria.  It highlights the importance of cross-sector collaboration among healthcare professionals to ensure the delivery of timely, high quality, youth responsive and accessible palliative care to young Victorians and their families.