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

Background Tumour genetic profiling has the potential to significantly improve cancer care by informing targeted treatments and improving patient outcomes. As use increases worldwide, greater attention should be paid to consumer experiences, need and priorities. This study is consumer-led and aims to inform an equitable and ethical roll out of future services by exploring consumer: 1) awareness of tumour genetic profiling, 2) experiences with tumour genetic profiling, and 3) priorities for improving access to and delivery of tumour genetic profiling within Victoria, Australia. Methods A consumer reference group was formed and supported by experienced researchers and professional staff of a comprehensive cancer centre alliance to develop and conduct the research study. A cross-sectional survey was conducted between January and May 2024, capturing demographic and disease characteristics, along with questions relating to each aim. Both quantitative and qualitative data were collected. Eligible participants were patients diagnosed with cancer whose treatment teams were based in Victoria, Australia, or caregivers of such patients. Results Of the 181 respondents (n = 36 carers, n = 145 patients), 23% (n = 44) reported that they (or the person they cared for) had undergone tumour genetic profiling. The majority reported a positive impact, including increased knowledge/understanding (n = 30, 68%) and personalised treatment options (n = 23, 52%), with very low decisional regret (mean: 3/100). However, 14% reported no understanding of the results at all, and confusion was reported as a drawback of testing. A higher level of shared decision making was associated with better understanding of results (p = 0.04). The primary barriers to uptake were lack of awareness (n = 88, 83%) and lack of perceived benefit from the treatment team (n = 19, 18%). Key strategies for improvement identified by participants included government-subsidised testing and improved patient and clinician education. Conclusions This study highlights gaps in consumer awareness and access to tumour genetic profiling, as well as the benefits of shared decision making. Overall, consumer-led insights emphasise the need for equitable funding, education, and systemic improvements. These findings can inform policies and practices aimed at delivering person-centred cancer care in Victoria and beyond. Future longitudinal research is needed to comprehensively explore these associations and track progress.