When, and how, should we talk about palliative care concepts with adolescents and young adults with cancer? Results from an international Delphi study — ASN Events
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  3. When, and how, should we talk about palliative care concepts with adolescents and young adults with cancer? Results from an international Delphi study

When, and how, should we talk about palliative care concepts with adolescents and young adults with cancer? Results from an international Delphi study (#14)

Ursula Sansom-Daly 1 2 3 , Holly Evans 1 3 , Lori Wiener 4 , Abby Rosenberg 5 6 7 , Meaghann Weaver 8 , Anne-Sophie Darlington 9 , Fiona Schulte 10 11 , Louise Sue 12 , Susan Trethewie 13 , Ruwanthie Amanda Fernando 14 , Toni Lindsay 15 , Anthony Herbert 16 17 , Maria Cable 18 , Jennifer Mack 19 , Richard J Cohn 1 3 , Antoinette Anazodo 2 3 , Claire Wakefield 1 3
  1. Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia
  2. Sydney Youth Cancer Service, Prince of Wales/Sydney Children's Hospitals, Randwick, NSW, Australia
  3. School of Clinical Medicine, UNSW Medicine and Health, UNSW Sydney, Kensington, NSW, Australia
  4. Psychosocial Support and Research Program, Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Maryland, USA
  5. Dana-Farber Cancer Institute, Department of Psychosocial Oncology and Palliative Care, Boston, USA
  6. Boston Children’s Hospital, Boston Children’s Hospital; Department of Medicine, Boston, USA
  7. Department of Pediatrics Divisions of Palliative Care & Pediatric Hematology/Oncology, Harvard Medical School, Massachusetts, USA
  8. University of Nebraska Medical Center, Omaha, USA
  9. School of Health Sciences, University of Southampton, Southampton, UK
  10. Division of Psychosocial Oncology, Department of Oncology, Cumming School of Medicine, University of Calgary, Calgary, Canada
  11. Hematology, Oncology and Transplant Program, Alberta Children’s Hospital, Calgary, Canada
  12. Adolescent and Young Adult Cancer Services Team, Canterbury District Health Board, Canterbury, New Zealand
  13. Sydney Children’s Hospital, Randwick, NSW, Australia
  14. Palliative Care Service, Liverpool Cancer Therapy Centre, Liverpool Hospital, Liverpool, NSW, Australia
  15. Chris O’Brien Lifehouse Cancer Centre, Sydney, NSW, Australia
  16. Queensland Children’s Hospital, Brisbane, QLD, Australia
  17. Children’s Health Queensland Clinical Unit, Faculty of Medicine, , University of Queensland, Brisbane, QLD, Australia
  18. School of Nursing, Midwifery and Health, Coventry University, Coventry, UK
  19. Population Sciences for Pediatric Hematology/Oncology, Dana-Farber Cancer Institute, Boston, USA

Background: According to standard of care, adolescents and young adults (AYAs) should be introduced to palliative care concepts regardless of disease status.1 This does not consistently occur,2 with health-professionals reporting barriers to doing so.3

Objective: To explore health-professionals’ practices, and perspectives, regarding introduction of palliative care concepts with AYAs with cancer.

Method: Study 1 examined palliative care communication among AYA oncology health-professionals in Australia, New Zealand and the UK. Study 2 used a modified two-round global Delphi survey to establish when health-professionals felt palliative care concepts were appropriate to introduce according to (i) patient prognosis, and (ii) treatment time-points.

Results: Study 1 (148 health-professionals from Australia/NZ/UK) found palliative care concepts were introduced regardless of disease status ‘usually’ or ‘always’ in 55% of the Australian, 20% New Zealand, and 48% UK health-professionals. Study 2 (248 health-professionals across 8 countries) reached consensus that some palliative care concepts (e.g., emotional and existential issues) were appropriate at all prognoses and treatment/disease timepoints. End-of-life-related medical care topics were only considered appropriate for patients with prognoses <50%, or from a patient’s second relapse onwards. Prognosis and goals of care, and quality of life topics were considered appropriate for most patients (<75% prognosis, most of the treatment trajectory).

Conclusions: Some palliative care topics are considered appropriate for most AYAs, across most of the treatment trajectory. Our data indicate that health-professionals’ opinions differ regarding introducing palliative care concepts to AYAs during cancer treatment, including at their first relapse. Supports for health-professionals will ensure best-practice team-based AYA oncology care.

  1. 1. Weaver, M.S., et al. Palliative Care as a Standard of Care in Pediatric Oncology. Pediatric blood & cancer 62 Suppl 5, S829-833 (2015)
  2. 2. Weaver, M.S., Rosenberg, A.R., Tager, J., Wichman, C.S. & Wiener, L. A Summary of Pediatric Palliative Care Team Structure and Services as Reported by Centers Caring for Children with Cancer. Journal of palliative medicine 21, 452-462 (2018)
  3. 3. Sansom-Daly, U.M., et al. End-of-Life Communication Needs for Adolescents and Young Adults with Cancer: Recommendations for Research and Practice. Journal of adolescent and young adult oncology 9, 157-165 (2020)
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