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

Experiences Accessing and Receiving Tumour Genetic Profiling in Victoria: A Consumer-Led Cross-Sectional Survey Study (126359)

Kathy Minas 1 , Melissa Sheldon 1 , Sonja Ilievska 1 , Naveena Nekkalapudi 1 , Kenneth Young 1 , Jonathan Granek 1 , Victoria Sharp 1 , Beth Abbey 1 , Genevieve Dall 2 , Joanne Britto 2 , Nonie Chan 2 , Michelle Barrett 2 , Mark Buzza 2 , Tamara Jones 3 , Sarah Stratulate 3 , Camille E Short 3 4
  1. Personalised Cancer Care Consumer Reference Group, Victorian Comprehensive Cancer Centre Alliance , Melbourne , Victoria , Australia
  2. Victorian Comprehensive Cancer Centre Alliance, Melbourne , Victoria, Australia
  3. Melbourne School of Psychological Sciences , Melbourne Centre for Behaviour Change , Parkville , VIC, Australia
  4. Department of Physiotherapy, School of Health Sciences , University of Melbourne , Parkville, VIC, Australia

Objectives: Tumour genetic profiling is increasingly used worldwide and is associated with improved patient outcomes.1 However, little is known about consumer experiences, needs, and priorities.2 This consumer-led study aimed to inform equitable and ethical implementation of tumour genetic profiling by exploring: (1) consumer awareness of tumour genetic profiling, (2) consumer experiences with tumour genetic profiling, and (3) consumer priorities for improving access and delivery of tumour genetic profiling services in Victoria, Australia.

Sample and Setting: Cancer patients (n=145) and caregivers (n=36) whose treatment teams were based in Victoria, Australia.  

Procedures: A consumer reference group, comprising patients and caregivers with lived experience of tumour genetic profiling, was established by the Victorian Comprehensive Cancer Centre Alliance under the Personalised Cancer Care Program. Consumers received training and led the research process.

A cross-sectional online survey was conducted from January to May 2024. The survey captured demographic and disease characteristics, and responses related to the study aims. Both quantitative and qualitative data were collected. Associations between shared decision-making and understanding of tumour genetic profiling were explored.

Results: Of the 181 respondents, 23% had undergone tumour genetic profiling. Reported benefits included increased understanding (68%) and access to personalised treatment (52%), with minimal decisional regret (mean score: 3/100). However, 14% had no understanding of the results, and confusion was reported. Greater shared decision-making was significantly associated with better understanding of results (p = 0.04). Major barriers to uptake were lack of awareness (83%) and low perceived benefit by treating teams (18%). Participants recommended subsidised testing and enhanced education for both patients and clinicians.

Conclusion and Clinical Implications: Consumer insights reveal gaps in awareness, access, and communication around tumour genetic profiling. Addressing these through funding, education, and shared decision-making can support equitable and effective implementation and guide person-centred cancer care policy in Victoria and beyond.

  1. Mateo J, Steuten L, Aftimos P, André F, Davies M, Garralda E, et al. Delivering precision oncology to patients with cancer. Nature Medicine. 2022;28(4):658-65.
  2. Smith-Uffen M, Bartley N, Davies G, Best M. Motivations and barriers to pursue cancer genomic testing: A systematic review. Patient Education and Counseling. 2021;104(6):1325-34