Poster Presentation Cancer Survivorship Conference 2023

Can better communication support quality of survivorship, even when cure is uncertain? (#157)

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

Aims. Introducing palliative care concepts to adolescents and young adults (AYAs) with cancer is an international standard of care, regardless of disease status.(1) Yet data indicates this happens infrequently, and often too late. Age-appropriate palliative care communication is especially critical for AYAs whose ‘survivorship’ involves living with recurrent or chronic disease.(2) Palliative conversations enable AYAs and their families to make choices about issues that impact care and quality of life. This multi-perspective study examined the acceptability and feasibility of ‘Voicing My CHOiCESTM (VMC), a US-based palliative communication tool, 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). Interdisciplinary health-professionals of different experience levels participated (mean years practising=17, range=4-30). Acceptability of VMC was high across groups (rating: 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 palliative communication (44%); 29% endorsed good rapport as a facilitator. Perspectives differed about the optimal timing for introducing palliative conversations, though relapse was considered an appropriate time by the greatest subset (40%). Parents and AYAs agreed that psychosocial or nursing professionals were best placed to introduce VMC (80% of parents, 50% of AYAs).

Conclusions. VMC is a promising tool that could improve quality of life for AYAs with cancer across their disease trajectory. These findings have informed an adaptation of VMC, tailored to 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 comfort and health-system resourcing to underpin timely palliative care communication practices.

  1. Weaver, M.S., Heinze, K.E., Kelly, K.P., Wiener, L., Casey, R.L., Bell, C.J., Wolfe, J., Garee, A.M., Watson, A. and Hinds, P.S. (2015), Palliative Care as a Standard of Care in Pediatric Oncology. Pediatric Blood and Cancer, 62: S829-S833. https://doi.org/10.1002/pbc.25695
  2. Sansom-Daly, U. M., Wakefield, C. E., Patterson, P., Cohn, R. J., Rosenberg, A. R., Wiener, L., & Fardell, J. E. (2019). 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(2): 157-165. doi:10.1089/jayao.2019.0084