Rapid Fire Best of the Best Poster Oral Clinical Oncology Society of Australia Annual Scientific Meeting 2022

Improving end-of-life communication for all adolescents and young adults with cancer: a multi-perspective, mixed-methods evaluation of the Voicing My CHOiCESTM tool. (#116)

Ursula M. Sansom-Daly 1 2 3 , Holly E. Evans 1 2 , Lori Wiener 4 , Pandora Patterson 5 6 , Antoinette Anazodo 2 , Afaf Girgis 7 , Richard J. Cohn 1 2 , Claire E. Wakefield 1 2
  1. School of Clinical Medicine, UNSW Medicine and Health, UNSW Sydney, Kensington, NSW, Australia
  2. Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia
  3. Sydney Youth Cancer Service, Prince of Wales/Sydney Children's Hospitals, Randwick, NSW, Australia
  4. Pediatric Oncology Branch, National Cancer Institute, Bethesda, MD, United States
  5. Research, Evaluation and Social Policy Unit, CanTeen Australia, Sydney, NSW, Australia
  6. Cancer Nursing Research Unit, Sydney Nursing School, The University of Sydney, Sydney, NSW, Australia
  7. Centre for Oncology Education and Research Translation (CONCERT),, Ingham Institute for Applied Medical Research, South Western Sydney Clinical School, UNSW, Sydney, NSW, Australia

Aims. Access to age-appropriate, timely end-of-life communication has been established as an international standard of care for adolescents and young adults (AYAs) with cancer.(1) However, evidence suggests that current clinical practice does not always meet this standard, for all AYAs. Having these conversations can enable AYAs and their families to make choices about issues that impact the young person’s care and quality of life. This multi-perspective study aimed to examine the acceptability and feasibility of using a US-based advance care planning tool (Voicing My CHOiCESTM; VMC) in the Australian context.

Methods. Semi-structured interviews with health-professionals, AYA cancer survivors (aged 15-25), and parents focused on: (i) acceptability of VMC, (ii) perceived barriers and facilitators to communication, and (iii) preferences for improving current practices, including implementing VMC locally.

Results. We interviewed 47 participants (n=33 health-professionals; n=9 AYAs, n=5 parents). Multi-disciplinary health-professionals with varying clinical experience participated (mean=17years practising, range=4-30). Acceptability of VMC was high across groups (helpfulness: M=4/5, SD=.77). All participants felt an adapted VMC would be suitable for implementation in Australia. Health-professionals own ‘readiness’ was the most endorsed barrier to end-of-life communication (44%); 29% endorsed good rapport as a facilitator. Perspectives differed about the optimal timing for introducing end-of-life conversations, though relapse was generally considered to be an appropriate time, by the greatest subset (40%). Parents and AYAs agreed that psychosocial or nursing professionals were best placed to explore end-of-life preferences (80% of parents, 50% of AYAs).

Conclusions. VMC is a promising tool and could improve quality of life for AYAs, across their cancer and care trajectory. These findings have informed an adaptation of VMC, tailored to better suit Australian AYAs’ cultural, linguistic, and health-system needs and preferences. To enable effective local uptake of VMC, future research must address professional capacity and health-system resourcing to underpin timely end-of-life communication practices.

  1. Weaver MS, Heinze KE, Kelly KP, et al. Palliative Care as a Standard of Care in Pediatric Oncology. Pediatr Blood Cancer. 2015;62 Suppl 5:S829-833.