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

Experiences Accessing and Receiving Tumour Genetic Profiling in Victoria: A Consumer-Led Cross-Sectional Survey Study | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Experiences Accessing and Receiving Tumour Genetic Profiling in Victoria: A Consumer-Led Cross-Sectional Survey Study Kathleen Minas, Melissa Sheldon, Sonja Ilievska, Naveena Nekkalapudi, and 12 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-6508330/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 12 You are reading this latest preprint version Abstract 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. Consumer-led patient and public involvement tumour genetic profiling somatic testing molecular testing precision oncology personalised care cancer shared decision making psycho-oncology Figures Figure 1 Figure 2 Background Tumour genetic profiling (often called somatic testing or molecular testing) is increasingly used worldwide to target cancer treatments and is associated with improved patient outcomes, including survival (1). Tumour genetic profiling has the potential to significantly improve cancer care through its ability to predict cancer recurrence risk, guide treatment decisions, and enhance patient and clinician understanding of cancer [2]. The major challenge for governments and healthcare providers is to fund and then harness these technologies for the benefit of all consumers (patients and caregivers affected by cancer), rather than sub-sectors of the population (2), and to do so in a person-centred and ethical way. Several studies have provided policy makers and practitioners with important insights into patient needs and experiences in this setting. A systematic review of barriers to genomic testing in oncology (including tumour genetic profiling) (3), suggests that common barriers may include costs, perceived clinical utility (or lack thereof), privacy and confidentiality concerns, and fear of psychological harm. However, the majority of included studies (n=15, 88%) used hypothetical scenarios, which limits the ability of policy-makers to draw from lived experience in decision-making (4). One study focused on real-world patient experiences and raised concerns about equitable and empowered access to testing (5). Namely, of 132 early-stage breast cancer patients treated within a university clinic who were eligible for the Oncotype DX genomic test, only half received it (5). The most common reason for not undergoing testing was not being offered it by the physician. Undergoing testing was associated with demographic (younger age) and disease characteristics (lower recurrence risk), as well as the patient reporting a more active decision-making style. These results reflect the broader oncology literature on shared decision-making (6), suggesting that outcomes can be improved when physicians inform patients of treatment choices and actively engage them in the decision-making process. However, shared decision-making is not always implemented within practice. Given this study was over a decade ago and focused on early-stage breast cancer patients, the extent to which these results reflect more diverse cancer experiences and current practice is unclear. In addition to barriers, the impact of uptake also needs to be considered to guide ethical models of care. Evidence suggests that uptake of tumour profiling can be psychologically beneficial for patients, even when results are not clinically meaningful. For example, a qualitative study conducted with cancer patients for whom previous therapies have failed, suggested gaining closure from feeling like they had done everything they could and deriving meaning from contributing to genomics research contributed to a sense of empowerment (7). However, there have also been some concerns raised by health professionals, such as financial burden to patients (8). An Australian survey of oncologists suggests that most medical oncologists have cared for patients who have self-funded direct-to-consumer tumour testing (9). Self-funding of testing increases risk of financial burden, can widen inequalities and may restrict shared decision-making opportunities if patients are seeking testing independently of care teams. A greater understanding of how patients feel impacted on balance (weighing the positive and negative impacts) would be useful for guiding ethical decision-making in practice. Caregiver experience should also be explored (4, 10). Caregivers for cancer patients are at a high risk of both anxiety and depression, and experience caregiver burden (11, 12). The extent to which caregivers experience benefits or harm from tumour profiling practices, especially for those whose loved ones have not survived cancer, is unknown. Finally, consumer involvement in developing models of tumour genetic profiling that could address access barriers and streamline services is needed. Central models of care, molecular tumour boards, education for patients, increased access to clinical trials, and robust consent processes have been proposed as ways to improve consumer experiences (9, 13, 14, 15). However, we don’t yet know how consumers feel about such options, and how to best allocate resources to provide equitable access to the services that consumers value. Whilst research on consumer perspectives and experiences with cancer genomic testing is building (3, 16, 17), there remain significant gaps in our understanding. There has also been a notable lack of consumer involvement in the research process. Involving consumers (patients and caregivers) in research is considered best practice in Australia and many other western countries (10), as it helps ensure that research outputs align with the interests of the target population and fosters trust in the healthcare system (18). The current study is consumer-led, with the research aims, study design, and interpretation of results led by patients and caregivers with a lived experience of tumour genomic profiling. The aims were developed in the context of a wider initiative, aiming to develop a roadmap for equitable tumour profiling within Victoria, Australia (13). The specific aims of the study were to (1) explore knowledge and awareness of tumour genetic profiling among consumers, (2) gain a multi-faceted understanding of consumer experiences of tumour genetic profiling, and (3) explore consumer priorities for improving access and delivery of tumour profiling within Victoria, Australia. It is hoped that the knowledge gained will assist health professionals and policy makers to develop patient-centred approaches to genomic profiling, and in turn, increase uptake and improve outcomes for cancer patients, families, friends, and carers. Methods Study design A consumer-led cross-sectional study involving the completion of an online survey from January to May 2024 was conducted. Ethics approval was obtained from the University of Melbourne Human Ethics Committee (#27758). The study is reported in line with the GRIPP2 checklist for projects involving patient and public involvement in research (19). Consumer-led research process A consumer reference group (CRG) was established by the Victorian Comprehensive Cancer Centre (VCCC) Alliance as part of the Personalised Cancer Care Program under the Strategic Program Plan 2020-2024. Consumers were recruited by the VCCC Alliance through an expression of interest process across metropolitan and regional Victoria and resulted in eight consumers with a history of cancer and knowledge of personalised cancer care and tumour genomic profiling. The purpose of the CRG was to utilise the expertise of lived experiences to support planned research activities. Consumers were upskilled in research through a series of educational workshops (see Supplementary File 1) aligned to key milestones within the project and were supported by the research team to develop the research questions. Early in the project, the CRG (with support from VCCC Alliance staff), developed the Project Responsibility Assignment Matrix to clarify specific roles and responsibilities (i.e. Responsible; Accountable; Consulted; and Informed) throughout the project's lifecycle. The matrix (see Supplementary File 1) was reviewed by the CRG throughout each project stage as deliverables and activities emerged. Researchers from the University of Melbourne were contracted to support the CRG to develop research questions and conduct a study. To support this process, the research team conducted a rapid review of the literature and presented what is currently known and unknown to the CRG via a brief video. Key studies most in line with interests expressed by the CRG were also presented in the video to provide insight into possible research approaches (20, 21). At the end of the video, the CRG were asked to reflect on their ideas and were sent a survey link that asked them to write down a research aim (“consider what you want to know and why”) and a question they could ask relating to this aim. The research team then facilitated a two-hour workshop with the CRG drawing on co-design methodology (22) to help consumers further explore which research questions were most important to them based on insights from the pre-workshop survey (23). Tools like PICO (24) and FINER (25) were utilised to help consumers think through the “ingredients” of a research question, and how to ensure the research was feasible and impactful. The research questions were broadly agreed upon by the end of the workshop. The research team then drafted the study protocol, which was reviewed and refined by the CRG in further workshops and via email. The research team held responsibility for conducting the study and preparing the manuscript under the direction of the CRG. To ensure all phases of the study remained consumer-led, online meetings were conducted regularly (including during protocol development, recruitment, data analysis and manuscript preparation), with all CRG members actively contributing and the balance of decision-making resting with the consumers. Additional information as per the GRIPP2 checklist is available in supplementary file 2. Participants and procedure Survey participants were recruited via a variety of channels. CRG members and VCCC Alliance staff reached out to their networks, including cancer specific charities and support organisations who disseminated the survey link via newsletters, email, and social media posts. The research team supported recruitment by disseminating study information to cancer specific research registries (e.g., Breast Cancer Network Australia), professional networks, prior research participants, and via paid social media posts on Facebook. Participants were eligible to participate if they were aged ≥18 years, had been diagnosed with cancer or had been a carer for someone who had been diagnosed with cancer, the team managing the cancer treatment was located in Victoria, Australia, and they were able to complete the survey in English or had someone who was able to help them complete the survey in English. Participants were excluded if cancer treatment and management occurred entirely outside the state of Victoria or if they resided outside of Australia. The survey was conducted using REDCap electronic data capture tools hosted at The University of Melbourne (26, 27). All potentially eligible participants were directed to the online survey where they could read the study information sheet and complete a screening questionnaire. If the screening questionnaire identified someone as being both a patient and carer, they were directed to complete patient focused questions only. Eligible participants provided consent and completed the survey online. Upon survey completion, participants could leave contact details if they wished to enter the draw to win one of five AUD$50 GiftPay vouchers. These vouchers could be used at major supermarkets, retail stores, or donated to charity. Survey The survey was drafted by academic leads (CES, SS) based on detailed conversations and direction from the CRG. The final survey collected detailed background information (demographics and health characteristics), as well as questions relating to each aim. Patients were asked to reflect on their own experiences, whereas carers were asked to provide details relating to the person they cared for, as well as answer questions from their own perceptive (i.e., priorities for improving testing). To increase the likelihood that participants would be able to accurately self-report testing and answer related questions in a valid way, a detailed description of genomic tumour profiling was included at the beginning of the survey. Where available, existing measures were utilised or adapted. Otherwise, measures were purpose-build for this study. The full survey is available to view in Supplementary File 3. A brief overview of measures is provided below. Knowledge and awareness of tumour genetic profiling (Aim 1) Three items were used to assess concepts relating to knowledge and awareness of tumour genetic profiling, including if discussions about tumour genetic profiling had occurred with the treatment team (purpose-built item), level of familiarity with the concept (28), and sources of information (if any) (28). The item and response options are presented in Table 2 with summary statistics. Consumer experiences of tumour genetic profiling (Aim 2) To assess uptake of testing, participants were asked if they (or the person they care/cared for) ever had a test for tumour genetic profiling. This item was purpose built for this study and included “yes”, “no” or “unsure” as response options. Participants that responded “yes” were directed to questions focused on the details of the test (e.g., cost, see Table 3), how information was presented (29), their level of understanding (29) (see Table 4), shared decision-making (30, 31), and decision regret (32, 33). The shared decision-making scale included 4 items (e.g., “How much did you and your health care providers talk about the reason you (the person you care/cared for) might/might not want to have tumour genetic profiling?”) and was scored according to the partial credit scoring instructions outlined in Valentine et al (30). The scale range is 0-4, with a higher score equating to higher shared decision-making. The decision regret scale included 5 items (e.g., “I regret the choice that was made”) ranging from 1-5 (strongly disagree-strongly agree), scored according to (32) on a scale of 0-100 with a higher score indicating higher regret. Participants who answer “yes” to tumour profiling were also directed to questions focused on the usefulness of results, what they gained, any drawback of test results (see Table 5), as well as rating the overall impact of testing (“Overall, how would you rate the impact of tumour genetic profiling on you personally/ on the person you care/cared for ?”) on a Visual Analogue Scale (0-100). Participants that responded “no” were directed to a question as to the reason why they did not undergo testing (see Table 7). Improving access and delivery of tumour genetic profiling in Victoria (Aim 3) All respondents were asked to rate the importance (‘Not at all’ to ‘Extremely’ important) of strategies to improving tumour genetic profiling for cancer patients in Victoria (Table 8), as well as selecting the MOST important strategy. All participants were also asked who they would prefer to receive test results from and from where they would trust to receive information about tumour genetic profiling (Table 9). Background information, including demographics and health related variables Nine items were used to collect demographic information from the sample, including age, location, gender, relationship status, education, employment, income, nationality, and language spoken at home. Ten items were used to collect information regarding health and disease characteristics, including global health status and overall quality of life (EORTC-QLQ-C30) (34), cancer type and stage, time since diagnosis, treatment stage, germline testing, treatments received, hospital type, and allied health services. Statistical analyses Descriptive statistics were calculated for all survey items (for patients and carers separately, and the total sample), using counts and proportions for categorial data, means and standards deviations for parametric continuous data, and medians and ranges for non-parametric continuous data. Qualitative data from open-ended responses were included to augment quantitative results related to the positive and negative impacts of testing (Aim 2). In regard to Aim 2, a logistic regression was conducted (including both patients and carers) to explore the association between shared decision-making (scale range 0-4) and the extent to which patients/carers understood the test results, dichotomised as “nothing at all/some things” to “most things/everything”. All analyses were conducted on a complete case basis using STATA 17. Alpha was set a priori at 0.05 with no correction for multiple analyses given the exploratory nature of the survey. Figure 1 was generated using postcode data and symbol-map tool available on datawrapper.de. https://www.datawrapper.de/maps/symbol-map Results Participant Characteristics A total of 475 people commenced the screening questionnaire. Of those, 214 went on to complete the consent form, 195 commenced the survey, and 181 completed the survey (n = 36 carers, n = 145 patients). Demographic characteristics were similar between patients and carer respondents (see Table 1 ). Participants were mostly female (77%) with a mean (SD) age of 59 ( 11 ) years. Just over half were employed (54%), and most had a university education (68%) and resided in a major city (64%). Breast cancer was the most common cancer type among patients (49%), while carers reported a larger variation in cancer types. The majority of carers (64%) reported that the person they had cared for is now deceased. Table 1 Summary of participant characteristics Patient Carer Combined N = 145 N = 36 N = 181 Age, years (Mean, SD) 61 ( 11 ) 55 ( 11 ) 59 ( 11 ) Gender N (%) N (%) N (%) Male 34 ( 23 ) 6 ( 17 ) 40 ( 22 ) Female 110 (76) 29 (81) 139 (77) Non-binary 1 ( 1 ) 1 ( 3 ) 2 ( 1 ) Location ( Fig. 1 ) Major City 90 (62) 25 (69) 115 (64) Regional 55 ( 38 ) 11 ( 31 ) 66 ( 37 ) Employment Working 77 (53) 21 (58) 98 (54) Retired 43 ( 30 ) 8 ( 22 ) 51 ( 28 ) Other duties/not working/on leave 25 ( 17 ) 7 ( 19 ) 32 ( 18 ) Income Up to $ 1000 per week 45 ( 31 ) 14 ( 39 ) 59 ( 33 ) $ 1000 or more per week 69 (48) 19 (53) 88 (49) Prefer not to say 31 ( 21 ) 3 ( 8 ) 34 ( 19 ) Education High school 15 ( 10 ) 4 ( 11 ) 19 ( 11 ) Certificate or Diploma 33 ( 23 ) 6 ( 17 ) 39 ( 22 ) University degree 97 (67) 26 (72) 123 (68) Nationality Australian 135 (93) 35 (97) 170 (94) Other 10 ( 7 ) 1 ( 3 ) 11 ( 6 ) Language other than English at home No 127 (88) 29 (81) 156 (86) Yes 18 ( 12 ) 7 ( 19 ) 25 ( 14 ) Health Mean (SD) Mean (SD) Mean (SD) Global Health Status ( 1 – 7 ) 5.12 (1.38) 5.37 (1.3) 5.17 (1.36) Overall Quality of life ( 1 – 7 ) 5.4 (1.29) 5.4 (1.53) 5.4(1.33) Distrust in health care providers ( 4 – 16 ) 7.99(2.07) 8.75 (2.12) 8.14 (2.10) Cancer type* □ N (%) N (%) N (%) Breast 71 (49) 5 ( 14 ) 76 ( 42 ) Prostate 12 ( 8 ) 4 ( 11 ) 16 ( 9 ) Lung 7 ( 5 ) 5 ( 14 ) 12 ( 7 ) Melanoma 9 ( 6 ) 4 ( 11 ) 13 ( 7 ) Bowel 7 ( 5 ) 6 ( 17 ) 13 ( 7 ) Head and Neck 10 ( 7 ) 4 ( 11 ) 14 ( 8 ) Pancreatic 2 ( 1 ) 4 ( 11 ) 6 ( 3 ) Thyroid 3 ( 2 ) 1 ( 3 ) 4 ( 2 ) Ovarian 3 ( 2 ) 1 ( 3 ) 4 ( 2 ) Cervical 2 ( 1 ) 0 (0) 2 ( 1 ) Leukemia 4 ( 3 ) 2 ( 6 ) 6 ( 3 ) Lymphoma 9 ( 6 ) 3 ( 8 ) 12 ( 7 ) Myeloma 4 ( 3 ) 1 ( 3 ) 5 ( 3 ) Sarcoma 7 ( 5 ) 6 ( 17 ) 13 ( 7 ) Unknown Primary 2 ( 1 ) 0 (0) 2 ( 1 ) Other 25 ( 17 ) 8 ( 22 ) 33 ( 18 ) Cancer stage* Stage I/II 68 (47) 6 ( 17 ) 74 ( 41 ) Stage III/IV 50 ( 35 ) 15 ( 42 ) 65 ( 36 ) Unknown 27 ( 19 ) 13 ( 36 ) 40 ( 22 ) Missing 0 ( 9 ) 2 ( 6 ) 2 ( 1 ) Time since* diagnosis N = 144 N = 34 N = 178 Mean (SD) 7 ( 7 ) 12 ( 13 ) 8 ( 9 ) Median (Range) 5 (0–36) 9 (0–45) 5 (0–45) Patient Circumstance* N = 145 N = 34 Diagnosis, staging and treatment planning 3( 2 ) 0 Undergoing curative treatment 21 ( 15 ) 3 ( 9 ) Care after initial treatment and recovery 85 (59) 8 ( 23 ) Managing recurrent, residual or metastatic disease 36 ( 25 ) 1 ( 3 ) End-of-life care 0 1 ( 3 ) Deceased 0 21 (62) *Carers completed these questions in relation to the person they cared for. □ Respondents could list more than one cancer type Patients: N = 121 reported one cancer type, N = 24 reported two or more cancer types. Carer: N = 25 reported one cancer type, N = 10 reported two or more cancer types. The distribution of participants across Victoria (Fig. 1 ) was reasonably representative of population demography, except for a lack of participants from the northwest of the state ( 35 ). Aim 1: Knowledge and awareness of tumour genetic profiling Among both patients and carers, over half the sample (n = 107, 55%) reported that tumour genetic profiling was not discussed with them by a member of the treatment team as part of cancer treatment planning. The majority of patients (N = 106, 68%) and carers (N = 20, 53%) also reported that they were “not at all” or only “a little” familiar with the concept of tumour genetic profiling prior to commencing the survey (Table 2 ). Among participants who were “a little” to “extremely familiar” (N = 142), they had learned the most about tumour genetic profiling from health care professionals (N = 37, 26%) and internet searches (N = 29, 20%). Table 2 Awareness of tumour genetic profiling Patient Carer Total N = 157 N = 38 N = 195 Did anyone in the treatment team discuss tumour genetic profiling with you as part of your treatment planning ( as part of treatment planning for the person care/cared for )? Yes 36 ( 23 ) 8 ( 21 ) 44 ( 23 ) No 86 (55) 21 (55) 107 (55) Not that I remember 35 ( 22 ) 9 ( 24 ) 44 ( 23 ) Prior to commencing this survey, how familiar were you with the concept of tumour genetic profiling? Not at all 43 ( 27 ) 10 ( 26 ) 53 ( 27 ) A little 63 ( 40 ) 10 ( 26 ) 73 ( 37 ) Somewhat 28 ( 18 ) 12 ( 32 ) 40 ( 21 ) Very 15 ( 10 ) 2 ( 5 ) 17 ( 9 ) Extremely 8 ( 5 ) 4 ( 11 ) 12 ( 6 ) From where have you learned most about tumour genetic profiling? * Health care professional 29 ( 25 ) 8 ( 29 ) 37 ( 26 ) Participating in research studies 9 ( 8 ) 1 ( 4 ) 10 ( 7 ) Reading research papers 17 ( 15 ) 2 ( 7 ) 19 ( 13 ) Searches on the internet 21 ( 18 ) 8 ( 29 ) 29 ( 20 ) Advertising on the internet 1 ( 1 ) 1 ( 4 ) 2 ( 1 ) Social media 5 ( 4 ) 1 ( 4 ) 6 ( 4 ) Films, TV, other media (e.g., newspaper articles) 9 ( 8 ) 4 ( 14 ) 13 ( 9 ) Friends or family 12 ( 11 ) 1 ( 4 ) 13 ( 9 ) Other 11 ( 10 ) 2 ( 7 ) 13 ( 9 ) *Excluding respondents who responded, ‘Not at all’ to “Prior to commencing this survey, how familiar were you with the concept of tumour genetic profiling?” (Patients, N = 43; Carers, N = 10). Aim 2: Multifaced understanding of consumer experiences of tumour genetic profiling Uptake of profiling A total of 44 (23%) participants reported that they (N = 35, 22%) or the person they care/cared for (N = 9, 24%) had undergone a test for tumour genetic profiling. Of these 44 participants, 41 provided detailed information regarding their testing experiences. The majority (N = 35, 85%) reported only one instance of testing, and 6 reported multiple instances. For the first (and often only) test, the majority of participants reported they had testing in the last five years (n = 29, 70%), accessed testing through their treatment team (n = 28, 68%), accessed testing at diagnosis or soon after (n = 26, 65%), and accessed testing at no cost (n = 26, 63%), and within 100km from home (n = 35, 88%). Participants who had accessed testing reported a wide range of cancer diagnoses and stages, including those reporting multiple instances of testing. See Table 3 for a detailed description of testing circumstances. Table 3 Circumstances first (and often only) genetic testing undertaken 1st Experience (n = 41)* 2nd Experience (n = 6) □ 3rd Experience (n = 2) + Year of testing Last five years 29 (70%) 4 2 How was testing arranged? Through the treatment team/medical specialist 28 (68%) 3 1 Through a research project or clinical trial 6 (15%) 2 Arranged on own through a private service 3 (7%) 1 1 Other 4 (10%) Cost of testing $ 0 26 (63%) 4 1 $ 100–1000 8 (20%) 2 1 $ 3000- $ 7000 7 (17%) 0 Amount of travel needed (KM) 0-100km 35 (88%) 5 2 100 + km 5 (12%) 1 Type of cancer test conducted for Breast 13 (32%) 1 Prostate 1 (2%) 1 1 Lung 7 (17%) 1 Colorectal 3 (7%) Leukemia 3 (7%) 1 1 Ovarian 2 (5%) Sarcoma 2 (5%) 1 Head and neck 2 (5%) Other 8 (20%) 1 Cancer stage at time of testing Stage 1 6 ( 15 ) Stage 2 6 ( 15 ) 2 1 Stage 3 10 ( 25 ) Stage 4 13 ( 33 ) 3 Unsure 5 ( 13 ) 1 1 Timing of test At diagnosis or soon after 26 (65) 2 1 During initial treatment review 4 ( 10 ) 1 During watchful waiting 7 ( 18 ) 1 1 With progression 3 ( 8 ) 2 *Data provided from n = 33 patients and n = 8 carers, includes n = 6 who reported multiple instances. □ Data provided from n = 3 patients and n = 3 carers. Percentages omitted due to low sample numbers. + Data provided from n = 2 patients. Percentages omitted due to low sample numbers. Understanding of results and shared decision-making Among those who reported testing, the methods used to communicate testing results were varied (see Table 4 ). This is further reflected in participant comments. For example, responses ranged from “a full printed report”, and “my oncologist phoned me on a Friday evening to advise the results (amazing commitment)” through to not being provided with results or not receiving adequate support to interpret results. Participant quotes relating to communication issues are presented in Table 5 . Understanding of results was also mixed. While 50% of participants reported understanding “most things” or “everything”, 14% reporting understanding “nothing at all”. Out of the nine carers that responded, none reported that they understood “everything” (see Table 4 ). Table 4 Communication and understanding of results Patient Carer Total N = 35 N = 9 N = 44 How did your physician present the tumour genetic profiling test results? □ Numbers (i.e., 6% chance) 14 ( 40 ) 2 ( 22 ) 16 ( 36 ) Words (i.e., ‘low risk’ or ‘high risk’) 19 (54) 7 (77) 21 (48) Graphics (i.e., charts) 9 ( 26 ) 1 ( 11 ) 10 ( 23 ) No feedback/waiting for results 5 ( 14 ) 0 5( 11 ) How much did you understand what you were told about your treatment choices based on the tumour genetic profiling test? Nothing at all 3 ( 9 ) 3 ( 33 ) 6 ( 14 ) Some things 10 ( 29 ) 2 ( 22 ) 12 ( 27 ) Most things 14 ( 40 ) 3 ( 33 ) 17 ( 39 ) Everything 5 ( 14 ) 0 (0) 5 ( 11 ) Missing 3 ( 9 ) 1 ( 11 ) 4 ( 9 ) □ Multiple responses could be recorded. Table 5 Participant quotes detailing issues experienced with communication of results. Communication issues Results not communicated Never heard back from CaSP as to results of testing. ID 35, patient, 75 years, 36 years post-diagnosis, melanoma and head and neck cancer Lack of communication between care team It takes months to get results, which is fine, but they are absolutely terrible at communicating the results with my oncologist. I'd really love to be sent a copy of their results so I can attempt to understand them better, and if they could send them to my GP and oncologist too so I'm not trying to convey messages I don't really understand. Especially when I got the results a couple of months before a doctor's appointment. Chemo destroyed my memory and I need all the medical people to keep all the other medical people in the loop. ID 88, patient, 40 years, 2 years post-diagnosis, colorectal cancer Didn’t get support/help to understand results in detail I think it would be useful to be able to access someone with specialised knowledge in the area to discuss the results with, in order to better understand them. our Oncologist is wonderful, but time constraints meant that I didn't get the time to discuss and understand these in detail. ID 268, carer, 45 years, 0 years post-diagnosis, neuroblastoma Clinician unable to interpret results Clinician not able to interpret results. I did that myself. ID 210 , patient, 49 years, 2 years post-diagnosis, lung cancer. Didn’t get support to understand results, results took a long time. Genetic profiling took nearly 5 months and then after the Oncologist told us in 2 sentences what it was (basically told us nothing.) We were then forced to go on Social media to learn more. We didn't get to see Genetic Counselor till 3 weeks later. ID 316, carer, 59 years, 6 years post-diagnosis, breast and kidney cancer. Shared decision-making scores ranged from 0–4 (full range of scale), with an average score of 2.10 (SD = 1.23). Health care teams discussing reasons for not having testing and asking if the patient wants to have testing were the poorest scoring items in the scale (see supplementary 4 for individual responses to each item). Using logistic regression analysis (N = 38), a significant association (p = 0.04) was observed between shared decision-making and the extent to which patients/carers understood test results, with the odds of understanding “most things/everything” 1.82 times higher (95% CI = 1.01; 3.28) for each one-unit increase in shared decision-making. Impacts of tumour profiling Impacts of accessing tumour genetic testing were explored in the survey in several ways. Of the 44 participants who reported having a test, 30 patients and 8 carers (N = 38) went on to report a self-rating of overall impact, from 0 (extremely negative) to 100 (extremely positive) (Fig. 2 ). The overall impact reported based on this item was highly positive (mean, SD = 91, 14; median = 98). A few participants reported more moderate scores (i.e., < 80; N = 4), though the minimum score reported was 50 (neutral). Decision regret was also very low, with participants (n = 38) reporting an average score of 3 (out of 100) where a higher score indicates a higher level of regret (2.7 and 3.4 for patients and carers, respectively). The majority of the 44 respondents also rated the test results as extremely useful (n = 27, 61%) or useful (n = 5, 11%). The main positive impacts included increased knowledge and understanding (n = 30, 68%), and more personalised treatment options (n = 23, 52%). Relief about the future (n = 15, 34%), and information relevant to life planning (n = 11, 25%) were also reported (Table 6 ). Open-ended responses also reflected knowledge and personalised treatment options as being positive impacts (Table 7 ). One participant felt they had a survival benefit as a result, saying “without it…I’d be dead now”. Others discussed reduced anxiety, feelings of empowerment, and gratitude for avoiding unnecessary treatment. Gratitude was also expressed among those who were in a position to self-fund tests (e.g., “I was grateful to have the financial capacity to access this and realise many wouldn't).” When asked about drawbacks of testing (see Table 6 ), 40% reported no drawbacks at all. Among the remaining participants, financial burden (20%), confusion (11%) and distress (9%) were reported. Further drawbacks were extrapolated from the open-ended questions, where participants commented that they experienced medical teams being dismissive, delays to treatments due to delays in results and results that aren’t necessarily helpful or are disappointing. One carer also noted they felt fear about the initial biopsy (Table 7 ). Table 6 Benefits and Drawbacks of TGP Patient Carer Total N = 35 N = 9 N = 44 How useful were the test results to you (to the person you care/cared for) ? Not at all useful 1 ( 3 ) 1 ( 11 ) 2 ( 2 ) Somewhat useful 3 ( 9 ) 1 ( 11 ) 4 ( 9 ) Useful 4 ( 11 ) 1 ( 11 ) 5 ( 11 ) Extremely useful 22 (63) 5 (56) 27 (61) Missing 5 ( 14 ) 1 ( 11 ) 6 ( 14 ) What do you feel you have gained from your test results (What do you think was gained from the test results) ? □ Increased knowledge and understanding 23 (66) 7 (78) 30 (68) Relief from uncertainty about the future 13 ( 37 ) 2 ( 22 ) 15 ( 34 ) More personalised treatment option 19 (54) 4 ( 44 ) 23 (52) Information relevant to life planning 9 ( 26 ) 2 ( 22 ) 11 ( 25 ) Other 3 ( 9 ) 1 ( 11 ) 4 ( 9 ) Not applicable – test results are not useful 1 ( 3 ) 1 ( 11 ) 2 ( 5 ) What do you feel were the drawback from your test and/or test results (from the test and/or test results)? □ Financial burden 8 ( 23 ) 1 ( 11 ) 9 ( 20 ) Increased uncertainty 3 ( 9 ) 1 ( 11 ) 4 ( 9 ) Psychological distress 2 ( 6 ) 2 ( 22 ) 4 ( 9 ) Confusion 2 ( 6 ) 3 ( 33 ) 5 ( 11 ) Other 2 ( 6 ) 2 ( 22 ) 4 ( 9 ) Not applicable – no drawbacks experienced 16 (46) 2 ( 22 ) 18 ( 41 ) □ Multiple responses could be recorded. *These items summed to make Decision Regret Scale Table 7 Quotes illustrating benefits and drawbacks of Tumour Genetic Profiling Positive Impacts Knowledge Empowerment For me, I liked having as much knowledge about what was happening to me as possible. It helped me to cope and made me feel empowered to make the best decisions for me going forward. It also helped me to talk about what had happened to my family and colleagues. ID 29, patient, 37 years, 4 years post-diagnosis, colorectal cancer Knowledge and treatment decision- making Genetic profiling provided me with crucial information regarding my tumour type and treatment type required. It helped reduce anxiety knowing I had some key information to assist me with decision-making for ongoing treatment and my pathway ahead. ID 231, patient, 52 years, 4 years post-diagnosis, breast cancer Personalised treatment options, treatment decision-making For me the genetic testing was part of my Allogenic Stem Cell Transplant procedure and since then when I have had an issue my Haematologist has been able to discount certain conditions as we have access to this valuable information. ID 78, patient, 66 years, 10 years post-diagnosis, leukemia Personalised treatment options, No equity of access Oncotype Dx test was not subsidized by Medicare so my oncologist could not mention it, as many people can't afford it and then would be very distressed if they knew about it without being able to have it. luckily i found out about it on my own through internet and Pubmed research and asked my oncologist about having it - to his and my huge relief hospital pathology could easily organize it. The results were essential in deciding my future treatment. ID 80, patient, 60 years, 10 years post-diagnosis, breast cancer Personalised treatment options. No equity of access My oncologist phoned me on a Friday evening to advise the results (amazing commitment) which supported my decision to not have chemotherapy. My diagnosis was at the very start of the pandemic, an additional stress. I was grateful to have the financial capacity to access this and realise many wouldn't. ID 82, patient, 66 years, 4 years post-diagnosis, breast cancer Personalised treatment options, reduced unnecessary treatment Prior to test I was receiving a generic treatment. Post test I was able to receive a targeted treatment. Saved a lot of radio and chemo. ID 355, patient, 50 years, 1-year post-diagnosis, breast cancer and colorectal cancer Personalised treatment options, reduced unnecessary treatment Biopsy was taken by the surgeon at time of diagnosis. No consent for genetic profiling was requested. I have no problem with this as the surgeon was able to fast track access to targeted treatment. ID 202 , carer, 51 years, 1-year post-diagnosis, lung cancer Survival benefit Without it and the service provided by the Garvan Institute in connecting me to a trial I would be dead by now instead of enjoying every day. I am so thankful this exists! ID 352, patient, 59 years, 2 years post-diagnosis, pancreatic cancer Negative Impacts Lack of communication, dismissive I changed oncologist because my first one was extremely dismissive. My second oncologist was the one who organised genetic testing and she was quite frustrated that the previous oncologist hadn't done it. It takes months to get results, which is fine, but they are absolutely terrible at communicating the results with my oncologist. I'd really love to be sent a copy of their results so I can attempt to understand them better, and if they could send them to my GP and oncologist too so I'm not trying to convey messages I don't really understand. Especially when I got the results a couple of months before a doctor's appointment. Chemo destroyed my memory and I need all the medical people to keep all the other medical people in the loop. ID 88, patient, 40 years, 2 years post-diagnosis, colorectal cancer No equity of access I wish I had been given the option, but I found in the public system these things are not discussed because there is an out-of-pocket cost. Then I would have found out if there were other treatments that may have been beneficial. I also think that in an age of increasingly personalised medicine, that there should be equity of access through government subsidy - otherwise you have one group of people who can have access to this information because they can afford it. ID 46, patient, 50 years, 5 years post-diagnosis, breast cancer Can’t always help In the end the cancer is there, and genomics won't always help. Quite often knowing the genomics can't stop the cancer spreading, but you need to know what the facts are. Sometimes Genomics are just the awful facts. ID 175, carer, 63 years, 40 years post-diagnosis, breast and lung cancer and lymphoma Delay in results meant more treatment received. If the results had been quicker it would have changed the way the cancer team treated and would have meant less operations and less stress. This was the second breast cancer and the slow result (5 months) also caused issues and long delays to treat the 3rd cancer from the Gene (Kidney cancer). ID 316, carer, 59 years, 6 years post-diagnosis, breast and kidney cancer Disappointment, can’t always help Disappointment – no new treatment options available. ID 199, patient, 51 years, 12 years post diagnosis, thyroid cancer. Can’t always help Drug development and effective treatments to target tumour mutation not progressed enough - mutation identified considered ultra-rare oncogene. ID 62, patient, 40 years, 14 years post diagnosis, Sarcoma Fear Fear of initial biopsy. ID322, carer, 66 years, not reported , Reasons for not having testing The main reason reported for not having undergone testing was a lack of awareness (n = 88, 83%) (Table 7 ). This was also reflected in participant comments: “Tumour genetic profiling was not discussed with me, so I wasn't aware it was potentially available to me” (ID 41, patient, 67 years, 3 years post-diagnosis, breast cancer) and “It was not raised as an option by my treatment team. I would have been interested in having it if I knew at the time” (ID 46, patient, 50 years, 5 years post-diagnosis, breast cancer). The second most common reason was the treatment team not seeing the benefit (n = 19, 18%). Some participants reported feelings of being “discouraged” to have testing and “pressured” to have treatment. Participants commented: “ The benefits were not explained to me and I was discouraged from having a test even though the multi-disciplinary team recommended it as an option for me”( ID 164, patient, 63 years, 2 years post-diagnosis, breast cancer); “ Treatment team pressured me to go ahead with treatment without the test and would not explain what genomic testing would tell me” (ID 419, patient, 63 years, 2 years post-diagnosis, breast cancer) and “ The treatment team did not bring it up, we did. They offered to do it but said it would be time consuming and expensive” (ID 240, carer, 51 years, 0 years post-diagnosis, endometrial cancer). Access issues were also identified, with 11% (n = 12) reporting there were no clinical trials available and 4% (n = 4) reporting they could not afford testing. No participants reported avoiding testing due to worry or stress, views of friends/family, or religious reasons. Table 8 Reasons for not undergoing tumour genetic profiling Reason Patient N = 85 Carer N = 21 Total N = 106 N (%) N (%) N (%) Not aware of it 73 (86) 15 (71) 88 (83) Do not understand it 5 ( 6 ) 0 (0) 5 ( 5 ) Did not feel it would benefit 4 ( 5 ) 0 (0) 4 ( 4 ) Treatment team did not feel it would have benefit 13 ( 15 ) 6 ( 29 ) 19 ( 18 ) Felt it would cause worry or stress 0 (0) 0 (0) 0 (0) Could not afford it 3 ( 4 ) 1 ( 5 ) 4 ( 4 ) Privacy concerns 1 ( 1 ) 0 (0) 1 ( 1 ) COVID-19 0 (0) 1 ( 5 ) 1 ( 1 ) Could not access it through Medicare 3 ( 4 ) 1 ( 5 ) 4 ( 4 ) No clinical trials available 5 ( 6 ) 7 ( 33 ) 12 ( 11 ) Would have to travel too far 0 (0) 0 (0) 0 (0) Views of friends and family 0 (0) 0 (0) 0 (0) Religious reasons 0 (0) 0 (0) 0 (0) Other (e.g., diagnosed too long ago, unavailable, discouraged). 6 ( 7 ) 0 (0) 6 ( 6 ) Aim 3: Improving access and delivery of tumour genetic profiling in Victoria Among all survey respondents, the top priorities for improving tumour genetic profiling in Victoria were government subsidised tests, access to health professionals, and education resources that could help them understand what testing is, and the results once obtained (Table 8 ). When asked to select the most important strategy for improving tumour genetic profiling in Victoria, the majority of participants indicated government subsidised tests (n = 71, 39%), followed by access to health professionals (n = 53, 29%), education resources (n = 48, 27%), and access to genetic counsellors (n = 9, 5%). Table 8 Importance of strategies to improve tumour genetic profiling Patient N = 145 Carer N = 36 Had testing N = 44 Did not have testing* N = 106 Total N = 181 N (%) N (%) N (%) N (%) N (%) Tests subsidised by the government Somewhat important 19 ( 13 ) 3 ( 8 ) 1 ( 2 ) 14 ( 13 ) 22 ( 12 ) Extremely important 122 (84) 31 (86) 36 (82) 84 (79) 153 (85) Access to health professionals with improved knowledge of genetic testing Somewhat important 21 ( 15 ) 2 ( 6 ) 3 ( 7 ) 17 ( 16 ) 23 ( 13 ) Extremely important 117 (81) 33 (92) 32 (73) 81 (76) 150 (83) Education to understand genetic testing, including differences between tumour genetic profiling and germline testing Somewhat important 30 ( 21 ) 5 ( 14 ) 7 ( 16 ) 22 ( 21 ) 35 ( 19 ) Extremely important 109 (75) 30 (83) 29 (66) 76 (72) 139 (77) Access to genetic counsellors Somewhat important 33 ( 23 ) 7 ( 19 ) 8 ( 18 ) 26 ( 25 ) 40 ( 22 ) Extremely important 93 (64) 26 (72) 26 (59) 62 (58) 119 (66) Access to research studies Somewhat important 44 ( 30 ) 11 ( 31 ) 9 ( 20 ) 34 ( 32 ) 55 ( 30 ) Extremely important 87 (60) 23 (64) 28 (64) 56 (53) 110 (61) Improving the consent process in research studies Somewhat important 40 ( 28 ) 10 ( 28 ) 7 ( 16 ) 32 ( 30 ) 50 ( 28 ) Extremely important 49 ( 34 ) 17 (47) 15 ( 34 ) 33 ( 31 ) 66 ( 37 ) NB. Scale included: Not at all, Somewhat unimportant, Neutral, Somewhat important, Extremely, I don’t know. *Does not include participants who responded ‘I don’t know’ Treatment teams were preferred by the majority of people (N = 118, 65%) for providing information on results, compared to a centralised service with expertise in tumour profiling (n = 63, 35%). Though it was noted in participant comments that a centralised service to ask questions, given treatment team availability, would be appreciated: “ Whilst I would like to access my results from my treating team I would also prefer a centralized service to be able to ask for questions and more information about the results if needed due to the limitations of a clinicians time and in some cases knowledge” (ID 44, patient, 41 years, 9 years post-diagnosis, lung cancer). Over half of participants also reported that they would trust information about tumour genetic profiling from healthcare professionals (n = 182, 93%), research studies (n = 113, 58%), and research papers (n = 109, 56%) (Table 9 ). Table 9 Preferred source of tumour genetic profiling information Patient Carer Total N = 157 N = 38 N = 195 From where would you trust to receive information about tumour genetic profiling? Health care professional 146 (93) 36 (95) 182 (93) Participating in research studies 96 (61) 17 (45) 113 (58) Reading research papers 87 (55) 22 (58) 109 (56) Searches on the internet 34 ( 22 ) 11 ( 29 ) 45 ( 23 ) Advertising on the internet 1 (0.6) 0 (0) 1 (0.5) Other forms of advertising 2 ( 1 ) 0 (0) 2 ( 1 ) Social Media 1 (0.6) 3 ( 8 ) 4 ( 2 ) Films, TV, other media (e.g., newspaper articles) 8 ( 5 ) 1 ( 3 ) 9 ( 5 ) Friends or family 14 ( 9 ) 2 ( 5 ) 16 ( 8 ) Other 6 ( 4 ) 1 ( 3 ) 7 ( 4 ) □ Multiple responses could be recorded. Discussion This study aimed to inform the development of patient-centred approaches to genetic profiling by providing insights into current awareness levels about tumour genetic profiling, lived experiences of accessing and utilising tumour genetic profiling (or not), and priorities for improving access and delivery of tumour profiling among cancer patients and carers in Victoria, Australia. The findings highlight significant gaps in consumer knowledge and access, the benefits of shared decision-making, and key strategies for improving equitable access to tumour genetic profiling services. These results have important implications for healthcare providers, policy makers, and researchers aiming to enhance the delivery of personalised cancer care. The points considered most important by the CRG were recorded (see supplementary file 5) and are discussed below. Awareness and Access to Tumour Genetic Profiling A major barrier identified in this study was the lack of awareness among consumers regarding tumour genetic profiling. More than half of respondents (55%) reported that tumour genetic profiling was not discussed with them by their treatment team, and 83% of those who had not undergone testing cited lack of awareness as a key reason. These findings align with previous research indicating that many patients remain uninformed about genetic testing options and their potential benefits ( 5 ). Enhancing clinician-patient communication about tumour genetic profiling, including routine discussions within oncology consultations, could help address this gap. However, clinicians may be hesitant to discuss testing if perceived clinical utility is low ( 36 ). This is problematic from the perspective of patient-centred care, as patients and carers may have different views about clinical utility than their care team. A recent survey of 602 Australians undergoing cancer genetic sequencing (probands) and their relatives showed that more than half of the sample population thought people would still want to know about single gene conditions that have no prevention or treatment options ( 37 ). Further, in our study, there were psychological benefits of testing, with some participants reporting that having testing made them feel empowered and helped them to cope. Overall, there seems to be a clear need for education across the board on the use and benefits of testing. Clinicians will also likely need increased support interpreting results and testing will need to become more widely available before they commence conversations about tumour genetic profiling as common practice ( 38 ). Although improving in Australia, access to tumour genetic profiling remains an issue( 13 ). Disparities in access were evident in the current study. While some patients benefited from tumour genetic profiling at no cost, others faced financial barriers, with some self-funding testing due to limited public funding. Government-subsidised testing was identified as the highest-priority strategy for improving access, with 85% of respondents rating it as extremely important. These findings reinforce the need for policy changes to expand publicly funded tumour genetic profiling and reduce socioeconomic disparities. Consumer Experiences with Tumour Genetic Profiling For those who had undergone tumour genetic profiling, the majority reported positive experiences, particularly in terms of increased knowledge and personalised treatment options. The reported decisional regret was extremely low, further supporting the value of tumour genetic profiling in cancer care. However, there were notable challenges related to understanding results, with 14% of respondents reporting no understanding of their test results at all. The study identified an association between shared decision-making and better understanding of test results. This finding underscores the importance of clinician engagement and patient and caregiver involvement in the decision-making process. Although decision regret was low, clinicians should be aware that for some consumers, genomic testing presented them with just the “awful facts”. Clear and supportive communication from healthcare providers, including access to genetic counsellors and structured educational resources, could enhance patient and caregiver comprehension and overall experience with tumour genetic profiling. Priorities for Improving Tumour Genetic Profiling Access and Delivery In addition to public funding for tumour genetic profiling, participants emphasised the need for increased clinician education and access to health professionals knowledgeable about genetic testing. Many respondents reported that their healthcare providers did not offer tumour genetic profiling or did not discuss its potential benefits. Education initiatives aimed at oncologists and other healthcare professionals could improve clinician confidence in discussing and recommending tumour genetic profiling to patients. As part of this, clinicians should be made aware of the impending ban on the use of adverse testing by life insurers in Australia ( 39 ), as multiple qualitative responses implied worries about such when considering undergoing testing. Participants also expressed strong support for a centralised service to provide additional information and support regarding tumour genetic profiling. While 65% of respondents preferred to receive test results from their treatment team, 35% indicated interest in a specialised centralised service for testing related queries. This reflects the need for a hybrid approach, combining direct clinician involvement with accessible, specialised support services to enhance patient understanding and decision-making. Implications for Healthcare Professionals and Policy Makers These findings highlight the critical role of healthcare professionals in facilitating patient access to and understanding of tumour genetic profiling. Training programs for oncologists, general practitioners, nursing and allied health professionals should include education on how to effectively communicate the benefits and limitations of tumour genetic profiling, as well as the importance of shared decision-making. Previous research in oncology has shown that training on shared decision-making can lead to behaviour change among clinicians ( 40 ). Providing patients with question prompt lists is also likely to improve patient-centred communication ( 41 ). For policy makers, this study underscores the urgency of expanding public funding for tumour genetic profiling to ensure equitable access. The cost-effectiveness of genetic testing in oncology has been demonstrated in international studies, with evidence suggesting that subsidising tests such as Oncotype DX can reduce the need for costly chemotherapy treatments ( 42 ). Avoiding unnecessary chemotherapy also reduces the financial and health burden associated with managing the short and long-term side-effects of chemotherapy (e.g., fatigue, cardio-toxicity ( 43 )). Incorporating holistic cost-benefit analyses in the Australian healthcare context that take health system and patient costs into account could support policy changes that increase funding for tumour genetic profiling. Additionally, addressing the identified communication gaps by implementing national guidelines for discussing genetic testing in cancer care could standardise practice and improve patient experiences. Policymakers should also consider supporting infrastructure for centralised genetic services that can provide expert guidance alongside routine oncology care. Limitations and Future Research While this study provides important insights, several limitations should be considered. The cross-sectional design does not allow for causal inferences, and the sample, though diverse, was skewed toward highly educated individuals and those with breast cancer. Given that breast cancer patients typically have greater access to support due to high funding levels ( 44 ), the experiences reported here may not be fully representative of other cancer populations. Future research should aim to capture a broader range of cancer experiences and explore differences in genetic testing access across diverse demographic groups. Another limitation was the reliance on self-reported data, which may be subject to recall bias. Additionally, the relatively small number of participants who had undergone tumour genetic profiling limited the statistical power for subgroup analyses. Future longitudinal studies tracking patient experiences over time would provide more comprehensive insights into the long-term impact of tumour genetic profiling. Conclusion This consumer-led study highlights the substantial gaps in awareness and access to tumour genetic profiling, the benefits of shared decision-making, and the priorities for improving equitable service delivery. Findings reinforce the need for increased public funding, enhanced clinician education, and better communication strategies to ensure patients receive timely and comprehensible information about tumour genetic profiling. The study provides actionable insights for healthcare professionals and policy makers seeking to implement person-centred, equitable, and ethical models of genetic testing in oncology. Abbreviations TGP: Tumour Genetic Profiling VCCC: Victorian Comprehensive Cancer centre CRG: Consumer Reference Group SD: Standard Deviation EORTC-QLQ-C30: European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 REDCap: Research Electronic Data Capture GP: General Practitioner PICO: Patient/Population, Intervention, Comparison, Outcome FINER: Feasible, Interesting, Novel, Ethical, Relevant GRIPP2: Guidance for Reporting Involvement of Patients and the Public (Version 2) ID: Identifier (used for anonymised participant quotes). AUD: Australian Dollar Declarations Ethics Approval, Consent to Participate, and Consent for Publication Ethics approval was obtained from the University of Melbourne Human Ethics Committee (#27758). All participants provided written informed consent online via REDCap and have been informed that no identifying details will be published in this manuscript. Our study adhered to the Declaration of Helsinki. Availability of data and materials All de-identifiable data and materials associated with this project can be requested by contacting the corresponding author. Competing Interests The authors have no competing interests to declare. Funding The Personalised Cancer Care Consumer-led Research Project was supported by the VCCC Alliance as part of the Strategic Program Plan 2021-2024 with funding from the Victorian Government. Author contributions Conceptualization: All authors Investigation: All authors Methodology: All authors Formal analysis: CES, TJ Project administration: GD, CES, JMB, NC, MB, MB, KM Writing – original draft: CES, SS Writing – review & editing: All authors All authors read and approved the final manuscript. Acknowledgements We gratefully acknowledge the valuable contributions of our consumer advisors, whose expertise and generosity extend across many organisations. In addition to their roles on this project, they serve in a range of advisory capacities that highlight the breadth of their impact. We also acknowledge the possibility that these organisations may have provided training or support to our consumer team over time. Kathleen Minas, Naveena Nekkalapudi, and Jonathan Granek are members of the Consumer Advisory Panel and Consumer Program at the Walter and Eliza Hall Institute of Medical Research. Naveena Nekkalapudi also serves as an active consumer representative with Breast Cancer Network Australia (BCNA). Jonathan Granek is the Founding Director and Chair of the EHE Rare Cancer Foundation Australia and holds additional roles as a member of the Community Advisory Committee and Consumer Register at the Peter MacCallum Cancer Centre; Ordinary Member (Consumer) of the Australian and New Zealand Sarcoma Association; Allied Health Professional (Consumer Advocate) with the Connective Tissue Oncology Society; and Consumer Representative and Advocacy Group Partner with Omico (Australian Genomic Cancer Medicine Centre). Melissa Sheldon is Co-chair of the Community Action Team (ComAct) within the Melanoma & Skin Cancer Advocacy Network and serves as a Consumer Advisor on the Consumer Advisory Committee (CAC) at Echuca Regional Health (ERH). Kenneth Young is a volunteer with MPN Alliance Australia. 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Global funding for cancer research between 2016 and 2020: a content analysis of public and philanthropic investments. The Lancet Oncology. 2023;24(6):636-45. Additional Declarations No competing interests reported. Supplementary Files S1.ConsumerWorkshops.docx S2.GRIPP2reporting.docx S3.StudySurvey.docx S4.Shareddecisionscaleitemscores.docx S5.Consumerreflections.docx Cite Share Download PDF Status: Under Review Version 1 posted Editorial decision: Revision requested 31 Jul, 2025 Reviews received at journal 08 Jul, 2025 Reviews received at journal 01 Jul, 2025 Reviewers agreed at journal 24 Jun, 2025 Reviews received at journal 24 Jun, 2025 Reviewers agreed at journal 23 Jun, 2025 Reviewers agreed at journal 13 Jun, 2025 Reviewers invited by journal 12 Jun, 2025 Editor assigned by journal 04 Jun, 2025 Editor invited by journal 13 May, 2025 Submission checks completed at journal 12 May, 2025 First submitted to journal 12 May, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-6508330","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":470950669,"identity":"bcffe684-8e89-4dc0-8717-4d0a914d549b","order_by":0,"name":"Kathleen Minas","email":"","orcid":"","institution":"Victorian Comprehensive Cancer Centre Alliance","correspondingAuthor":false,"prefix":"","firstName":"Kathleen","middleName":"","lastName":"Minas","suffix":""},{"id":470950670,"identity":"1bfae8e0-3f0c-46b8-8527-47c16523e9f8","order_by":1,"name":"Melissa Sheldon","email":"","orcid":"","institution":"Victorian Comprehensive Cancer Centre 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03:08:16","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-6508330/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-6508330/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":84810866,"identity":"968f1a28-8057-47f3-a22b-20575ed191bc","added_by":"auto","created_at":"2025-06-17 14:51:28","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":277936,"visible":true,"origin":"","legend":"\u003cp\u003eHeat map showing participant location in Victoria, Australia. Darker colours equal higher participant density.\u003c/p\u003e","description":"","filename":"floatimage1.png","url":"https://assets-eu.researchsquare.com/files/rs-6508330/v1/2cf975e842d0a91c30938591.png"},{"id":84809719,"identity":"92dcf11c-2a6f-4f12-bfb9-13e3f80b3e1b","added_by":"auto","created_at":"2025-06-17 14:43:28","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":13357,"visible":true,"origin":"","legend":"\u003cp\u003eSelf-rated impact of tumour genetic profiling\u003c/p\u003e","description":"","filename":"floatimage2.png","url":"https://assets-eu.researchsquare.com/files/rs-6508330/v1/d8b5b2c3cbde67436bee4fa7.png"},{"id":84812148,"identity":"077556d9-08bf-4564-85f6-88bb86602877","added_by":"auto","created_at":"2025-06-17 14:59:30","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":3648004,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6508330/v1/fa49a3f8-11b4-4642-9a2a-acc0cd8e519e.pdf"},{"id":84809735,"identity":"5b7bc571-abd3-4425-8ad7-3ba6c7a807ba","added_by":"auto","created_at":"2025-06-17 14:43:28","extension":"docx","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":3282332,"visible":true,"origin":"","legend":"","description":"","filename":"S1.ConsumerWorkshops.docx","url":"https://assets-eu.researchsquare.com/files/rs-6508330/v1/63851caa98aa216e3debc00f.docx"},{"id":84809720,"identity":"33a695e9-6c5c-437c-bc0a-8a997f8a162e","added_by":"auto","created_at":"2025-06-17 14:43:28","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":30448,"visible":true,"origin":"","legend":"","description":"","filename":"S2.GRIPP2reporting.docx","url":"https://assets-eu.researchsquare.com/files/rs-6508330/v1/c715aa0a378a3b3c2689afd6.docx"},{"id":84809727,"identity":"3b9cc1fc-2035-4e33-b08a-cf4a2a8185cc","added_by":"auto","created_at":"2025-06-17 14:43:28","extension":"docx","order_by":2,"title":"","display":"","copyAsset":false,"role":"supplement","size":544171,"visible":true,"origin":"","legend":"","description":"","filename":"S3.StudySurvey.docx","url":"https://assets-eu.researchsquare.com/files/rs-6508330/v1/0532b0a4224361b73fa54d90.docx"},{"id":84810867,"identity":"ed7287c7-b867-4e2a-8c40-7e8864f70dc6","added_by":"auto","created_at":"2025-06-17 14:51:28","extension":"docx","order_by":3,"title":"","display":"","copyAsset":false,"role":"supplement","size":35929,"visible":true,"origin":"","legend":"","description":"","filename":"S4.Shareddecisionscaleitemscores.docx","url":"https://assets-eu.researchsquare.com/files/rs-6508330/v1/a1a31e648ab3dc03eacc2397.docx"},{"id":84809730,"identity":"4bad0a04-e665-4658-8596-f4c9cc1673d0","added_by":"auto","created_at":"2025-06-17 14:43:28","extension":"docx","order_by":4,"title":"","display":"","copyAsset":false,"role":"supplement","size":28042,"visible":true,"origin":"","legend":"","description":"","filename":"S5.Consumerreflections.docx","url":"https://assets-eu.researchsquare.com/files/rs-6508330/v1/49d0dc1e58c2b9624e5ed7d1.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"\u003cp\u003eExperiences Accessing and Receiving Tumour Genetic Profiling in Victoria: A Consumer-Led Cross-Sectional Survey Study\u003c/p\u003e","fulltext":[{"header":"Background","content":"\u003cp\u003eTumour genetic profiling (often called somatic testing or molecular testing) is increasingly used worldwide to target cancer treatments and is associated with improved patient outcomes, including survival\u0026nbsp;(1). Tumour genetic profiling has the potential to significantly improve cancer care through its ability to predict cancer recurrence risk, guide treatment decisions, and enhance patient and clinician understanding of cancer [2]. The major challenge for governments and healthcare providers is to fund and then harness these technologies for the benefit of all consumers (patients and caregivers affected by cancer), rather than sub-sectors of the population (2), and to do so in a person-centred and ethical way.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eSeveral studies have provided policy makers and practitioners with important insights into patient needs and experiences in this setting. A systematic review of barriers to genomic testing in oncology (including tumour genetic profiling) (3), suggests that common barriers may include costs, perceived clinical utility (or lack thereof), privacy and confidentiality concerns, and fear of psychological harm. However, the majority of included studies (n=15, 88%) used hypothetical scenarios, which limits the ability of policy-makers to draw from lived experience in decision-making (4). One study focused on real-world patient experiences and raised concerns about equitable and empowered access to testing (5). Namely, of 132 early-stage breast cancer patients treated within a university clinic who were eligible for the Oncotype DX genomic test, only half received it (5). The most common reason for not undergoing testing was not being offered it by the physician. Undergoing testing was associated with demographic (younger age) and disease characteristics (lower recurrence risk), as well as the patient reporting a more active decision-making style. These results reflect the broader oncology literature on shared decision-making (6), suggesting that outcomes can be improved when physicians inform patients of treatment choices and actively engage them in the decision-making process. However, shared decision-making is not always implemented within practice. Given this study was over a decade ago and focused on early-stage breast cancer patients, the extent to which these results reflect more diverse cancer experiences and current practice is unclear.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u0026nbsp; In addition to barriers, the impact of uptake also needs to be considered to guide ethical models of care. Evidence suggests that uptake of tumour profiling can be psychologically beneficial for patients, even when results are not clinically meaningful. For example, a qualitative study conducted with cancer patients for whom previous therapies have failed, suggested gaining closure from feeling like they had done everything they could and deriving\u0026nbsp;meaning from contributing to genomics research contributed to a sense of empowerment (7). However, there have also been some concerns raised by health professionals, such as financial burden to patients (8). An Australian survey of oncologists suggests that most medical oncologists have cared for patients who have self-funded direct-to-consumer tumour testing (9). Self-funding of testing increases risk of financial burden, can widen inequalities and may restrict shared decision-making opportunities if patients are seeking testing independently of care teams. A greater understanding of how patients feel impacted on balance (weighing the positive and negative impacts) would be useful for guiding ethical decision-making in practice. Caregiver experience should also be explored (4, 10). Caregivers for cancer patients are at a high risk of both anxiety and depression, and experience caregiver burden\u0026nbsp;(11, 12). The extent to which caregivers experience benefits or harm from tumour profiling practices, especially for those whose loved ones have not survived cancer, is unknown. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003eFinally, consumer involvement in developing models of tumour genetic profiling that could address access barriers and streamline\u0026nbsp;services is needed. Central models of care, molecular tumour boards, education for patients, increased access to clinical trials, and robust consent processes have been proposed as ways to improve consumer experiences (9, 13, 14, 15). However, we don\u0026rsquo;t yet know how consumers feel about such options, and how to best allocate resources to provide equitable access to the services that consumers value.\u003c/p\u003e\n\u003cp\u003eWhilst research on consumer perspectives and experiences with cancer genomic testing is building (3, 16, 17), there remain significant gaps in our understanding. There has also been a notable lack of consumer involvement in the research process. Involving consumers (patients and caregivers) in research is considered best practice in Australia and many other western countries (10), as it helps ensure that research outputs align with the interests of the target population\u0026nbsp;and fosters trust in the healthcare system\u0026nbsp;(18).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe current study is consumer-led, with the research aims, study design, and interpretation of results led by patients and caregivers with a lived experience of tumour genomic profiling. The aims were developed in the context of a wider initiative, aiming to develop a roadmap for equitable tumour profiling within Victoria, Australia (13). The specific aims of the study were to (1) explore knowledge and awareness of tumour genetic profiling among consumers, (2) gain a multi-faceted understanding of consumer experiences of tumour genetic profiling, and (3) explore consumer priorities for improving access and delivery of tumour profiling within Victoria, Australia. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003eIt is hoped that the knowledge gained will assist health professionals and policy makers to develop patient-centred approaches to genomic profiling, and in turn, increase uptake and improve outcomes for cancer patients, families, friends, and carers.\u0026nbsp;\u003c/p\u003e"},{"header":"Methods","content":"\u003ch2\u003eStudy design\u0026nbsp;\u003c/h2\u003e\n\u003cp\u003eA consumer-led cross-sectional study involving the completion of an online survey from January to May 2024 was conducted. Ethics approval was obtained from the University of Melbourne Human Ethics Committee (#27758). The study is reported in line with the GRIPP2 checklist for projects involving patient and public involvement in research (19).\u0026nbsp;\u003c/p\u003e\n\u003ch2\u003eConsumer-led research process\u003c/h2\u003e\n\u003cp\u003eA consumer reference group (CRG) was established by the Victorian Comprehensive Cancer Centre (VCCC) Alliance as part of the Personalised Cancer Care Program under the Strategic Program Plan 2020-2024. Consumers were recruited by the VCCC Alliance through an expression of interest process across metropolitan and regional Victoria and resulted in eight consumers with a history of cancer and knowledge of personalised cancer care and tumour genomic profiling. The purpose of the CRG was to utilise the expertise of lived experiences to support planned research activities. Consumers were upskilled in research through a series of educational workshops (see Supplementary File 1) aligned to key milestones within the project and were supported by the research team to develop the research questions.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eEarly in the project, the CRG (with support from VCCC Alliance staff), developed the Project Responsibility Assignment Matrix to clarify specific roles and responsibilities (i.e. Responsible; Accountable; Consulted; and Informed) throughout the project\u0026apos;s lifecycle. The matrix (see Supplementary File 1) was reviewed by the CRG throughout each project stage as deliverables and activities emerged.\u003c/p\u003e\n\u003cp\u003eResearchers from the University of Melbourne were contracted to support the CRG to develop research questions and conduct a study. To support this process, the research team conducted a rapid review of the literature and presented what is currently known and unknown to the CRG via a brief video. Key studies most in line with interests expressed by the CRG were also presented in the video to provide insight into possible research approaches (20, 21). At the end of the video, the CRG were asked to reflect on their ideas and were sent a survey link that asked them to write down a research aim (\u0026ldquo;consider what you want to know and why\u0026rdquo;) and a question they could ask relating to this aim. The research team then facilitated a two-hour workshop with the CRG drawing on co-design methodology (22) to help consumers further explore which research questions were most important to them based on insights from the pre-workshop survey (23). Tools like PICO (24) and FINER (25) were utilised to help consumers think through the \u0026ldquo;ingredients\u0026rdquo; of a research question, and how to ensure the research was feasible and impactful. The research questions were broadly agreed upon by the end of the workshop. The research team then drafted the study protocol, which was reviewed and refined by the CRG in further workshops and via email. The research team held responsibility for conducting the study and preparing the manuscript under the direction of the CRG. To ensure all phases of the study remained consumer-led, online meetings were conducted regularly (including during protocol development, recruitment, data analysis and manuscript preparation), with all CRG members actively contributing and the balance of decision-making resting with the consumers. Additional information as per the GRIPP2 checklist is available in supplementary file 2. \u0026nbsp;\u003c/p\u003e\n\u003ch2\u003eParticipants and procedure\u003c/h2\u003e\n\u003cp\u003eSurvey participants were recruited via a variety of channels. CRG members and VCCC Alliance staff reached out to their networks, including cancer specific charities and support organisations who disseminated the survey link via newsletters, email, and social media posts. The research team supported recruitment by disseminating study information to cancer specific research registries (e.g., Breast Cancer Network Australia), professional networks, prior research participants, and via paid social media posts on Facebook. Participants were eligible to participate if they were aged \u0026ge;18 years, had been diagnosed with cancer or had been a carer for someone who had been diagnosed with cancer, the team managing the cancer treatment was located in Victoria, Australia, and they were able to complete the survey in English or had someone who was able to help them complete the survey in English. Participants were excluded if cancer treatment and management occurred entirely outside the state of Victoria or if they resided outside of Australia. \u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe survey was conducted using REDCap electronic data capture tools hosted at The University of Melbourne (26, 27). All potentially eligible participants were directed to the online survey where they could read the study information sheet and complete a screening questionnaire. If the screening questionnaire identified someone as being both a patient and carer, they were directed to complete patient focused questions only. Eligible participants provided consent and completed the survey online. Upon survey completion, participants could leave contact details if they wished to enter the draw to win one of five AUD$50 GiftPay vouchers. These vouchers could be used at major supermarkets, retail stores, or donated to charity.\u0026nbsp;\u003c/p\u003e\n\u003ch2\u003eSurvey\u003c/h2\u003e\n\u003cp\u003eThe survey was drafted by academic leads (CES, SS) based on detailed conversations and direction from the CRG. The final survey collected detailed background information (demographics and health characteristics), as well as questions relating to each aim. Patients were asked to reflect on their own experiences, whereas carers were asked to provide details relating to the person they cared for, as well as answer questions from their own perceptive (i.e., priorities for improving testing). To increase the likelihood that participants would be able to accurately self-report testing and answer related questions in a valid way, a detailed description of genomic tumour profiling was included at the beginning of the survey. Where available, existing measures were utilised or adapted. Otherwise, measures were purpose-build for this study. The full survey is available to view in Supplementary File 3. A brief overview of measures is provided below.\u0026nbsp;\u003c/p\u003e\n\u003ch3\u003eKnowledge and awareness of tumour genetic profiling (Aim 1)\u003c/h3\u003e\n\u003cp\u003eThree items were used to assess concepts relating to knowledge and awareness of tumour genetic profiling, including if discussions about tumour genetic profiling had occurred with the treatment team (purpose-built item), level of familiarity with the concept (28), and sources of information (if any) (28). The item and response options are presented in Table 2 with summary statistics. \u0026nbsp; \u0026nbsp;\u003c/p\u003e\n\u003ch3\u003eConsumer experiences of tumour genetic profiling (Aim 2)\u003c/h3\u003e\n\u003cp\u003eTo assess uptake of testing, participants were asked if they (or the person they care/cared for) ever had a test for tumour genetic profiling. This item was purpose built for this study and included \u0026ldquo;yes\u0026rdquo;, \u0026ldquo;no\u0026rdquo; or \u0026ldquo;unsure\u0026rdquo; as response options. Participants that responded \u0026ldquo;yes\u0026rdquo; were directed to questions focused on the details of the test (e.g., cost, see Table 3), how information was presented (29), their level of understanding (29) (see Table 4), shared decision-making (30, 31), and decision regret (32, 33). The shared decision-making scale included 4 items (e.g., \u0026ldquo;How much did you and your health care providers talk about the reason you \u003cem\u003e(the person you care/cared for)\u0026nbsp;\u003c/em\u003emight/might \u003cu\u003enot\u003c/u\u003e want to have tumour genetic profiling?\u0026rdquo;) and was scored according to the partial credit scoring instructions outlined in Valentine et al (30). The scale range is 0-4, with a higher score equating to higher shared decision-making. \u0026nbsp;The decision regret scale included 5 items (e.g., \u0026ldquo;I regret the choice that was made\u0026rdquo;) ranging from 1-5 (strongly disagree-strongly agree), scored according to (32) on a scale of 0-100 with a higher score indicating higher regret. Participants who answer \u0026ldquo;yes\u0026rdquo; to tumour profiling were also directed to questions focused on the usefulness of results, what they gained, any drawback of test results (see Table 5), as well as rating the overall impact of testing (\u0026ldquo;Overall, how would you rate the impact of tumour genetic profiling on you personally/\u003cem\u003eon the person you care/cared for\u003c/em\u003e?\u0026rdquo;) on a Visual Analogue Scale (0-100). Participants that responded \u0026ldquo;no\u0026rdquo; were directed to a question as to the reason why they did not undergo testing (see Table 7).\u0026nbsp;\u003c/p\u003e\n\u003ch3\u003eImproving access and delivery of tumour genetic profiling in Victoria (Aim 3)\u003c/h3\u003e\n\u003cp\u003eAll respondents were asked to rate the importance (\u0026lsquo;Not at all\u0026rsquo; to \u0026lsquo;Extremely\u0026rsquo; important) of strategies to improving tumour genetic profiling for cancer patients in Victoria (Table 8), as well as selecting the MOST important strategy. All participants were also asked who they would prefer to receive test results from and from where they would trust to receive information about tumour genetic profiling (Table 9).\u0026nbsp;\u003c/p\u003e\n\u003ch3\u003eBackground information, including demographics and health related variables\u0026nbsp;\u003c/h3\u003e\n\u003cp\u003eNine items were used to collect demographic information from the sample, including age, location, gender, relationship status, education, employment, income, nationality, and language spoken at home. \u0026nbsp;Ten items were used to collect information regarding health and disease characteristics, including global health status and overall quality of life (EORTC-QLQ-C30) (34), cancer type and stage, time since diagnosis, treatment stage, germline testing, treatments received, hospital type, and allied health services.\u0026nbsp;\u003c/p\u003e\n\u003ch2\u003eStatistical analyses\u0026nbsp;\u003c/h2\u003e\n\u003cp\u003eDescriptive statistics were calculated for all survey items (for patients and carers separately, and the total sample), using counts and proportions for categorial data, means and standards deviations for parametric continuous data, and medians and ranges for non-parametric continuous data. Qualitative data from open-ended responses were included to augment quantitative results related to the positive and negative impacts of testing (Aim 2).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eIn regard to Aim 2, a logistic regression was conducted (including both patients and carers) to explore the association between shared decision-making (scale range 0-4) and the extent to which patients/carers understood the test results, dichotomised as \u0026ldquo;nothing at all/some things\u0026rdquo; to \u0026ldquo;most things/everything\u0026rdquo;.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAll analyses were conducted on a complete case basis using STATA 17. Alpha was set \u003cem\u003ea priori\u003c/em\u003e at 0.05 with no correction for multiple analyses given the exploratory nature of the survey. Figure 1 was generated using postcode data and symbol-map tool available on datawrapper.de. \u0026nbsp; \u0026nbsp;https://www.datawrapper.de/maps/symbol-map\u0026nbsp;\u003c/p\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eParticipant Characteristics\u003c/h2\u003e \u003cp\u003eA total of 475 people commenced the screening questionnaire. Of those, 214 went on to complete the consent form, 195 commenced the survey, and 181 completed the survey (n\u0026thinsp;=\u0026thinsp;36 carers, n\u0026thinsp;=\u0026thinsp;145 patients). Demographic characteristics were similar between patients and carer respondents (see Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). Participants were mostly female (77%) with a mean (SD) age of 59 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e) years. Just over half were employed (54%), and most had a university education (68%) and resided in a major city (64%). Breast cancer was the most common cancer type among patients (49%), while carers reported a larger variation in cancer types. The majority of carers (64%) reported that the person they had cared for is now deceased.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eSummary of participant characteristics\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"4\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePatient\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eCarer\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eCombined\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;145\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;36\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;181\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eAge, years\u003c/b\u003e (Mean, SD)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e61 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e55 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e59 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eGender\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003eN (%)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cb\u003eN (%)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e\u003cb\u003eN (%)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e34 (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e6 (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e40 (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e110 (76)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e29 (81)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e139 (77)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNon-binary\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eLocation (\u003c/b\u003eFig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e\u003cb\u003e)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMajor City\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e90 (62)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e25 (69)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e115 (64)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eRegional\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e55 (\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e11 (\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e66 (\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eEmployment\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eWorking\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e77 (53)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e21 (58)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e98 (54)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eRetired\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e43 (\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8 (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e51 (\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOther duties/not working/on leave\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e25 (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e7 (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e32 (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eIncome\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eUp to \u003cspan\u003e$\u003c/span\u003e1000 per week\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e45 (\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e14 (\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e59 (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cspan\u003e$\u003c/span\u003e1000 or more per week\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e69 (48)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e19 (53)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e88 (49)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePrefer not to say\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e31 (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3 (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e34 (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eEducation\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHigh school\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e15 (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e19 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCertificate or Diploma\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e33 (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e6 (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e39 (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eUniversity degree\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e97 (67)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e26 (72)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e123 (68)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eNationality\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAustralian\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e135 (93)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e35 (97)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e170 (94)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOther\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e10 (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e11 (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eLanguage other than English at home\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e127 (88)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e29 (81)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e156 (86)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e18 (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e7 (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e25 (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eHealth\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003eMean (SD)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cb\u003eMean (SD)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e\u003cb\u003eMean (SD)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGlobal Health Status (\u003cspan additionalcitationids=\"CR2 CR3 CR4 CR5 CR6\" citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5.12 (1.38)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e5.37 (1.3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e5.17 (1.36)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOverall Quality of life (\u003cspan additionalcitationids=\"CR2 CR3 CR4 CR5 CR6\" citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5.4 (1.29)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e5.4 (1.53)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e5.4(1.33)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDistrust in health care providers (\u003cspan additionalcitationids=\"CR5 CR6 CR7 CR8 CR9 CR10 CR11 CR12 CR13 CR14 CR15\" citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e7.99(2.07)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8.75 (2.12)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e8.14 (2.10)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eCancer type*\u003c/b\u003e \u003csup\u003e□\u003c/sup\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003eN (%)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cb\u003eN (%)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e\u003cb\u003eN (%)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBreast\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e71 (49)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e5 (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e76 (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eProstate\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e12 (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e16 (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLung\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e7 (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e5 (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e12 (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMelanoma\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e9 (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e13 (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBowel\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e7 (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e6 (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e13 (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHead and Neck\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e10 (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e14 (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePancreatic\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e6 (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eThyroid\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOvarian\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCervical\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLeukemia\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e6 (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLymphoma\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e9 (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3 (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e12 (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMyeloma\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e5 (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSarcoma\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e7 (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e6 (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e13 (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eUnknown Primary\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOther\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e25 (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8 (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e33 (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eCancer stage*\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eStage I/II\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e68 (47)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e6 (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e74 (\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eStage III/IV\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e50 (\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e15 (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e65 (\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eUnknown\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e27 (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e13 (\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e40 (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMissing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0 (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTime since* diagnosis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;144\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;34\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;178\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMean (SD)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e7 (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e12 (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e8 (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMedian (Range)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5 (0\u0026ndash;36)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e9 (0\u0026ndash;45)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e5 (0\u0026ndash;45)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003ePatient Circumstance*\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;145\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;34\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDiagnosis, staging and treatment planning\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3(\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eUndergoing curative treatment\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e21 (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3 (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCare after initial treatment and recovery\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e85 (59)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8 (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eManaging recurrent, residual or metastatic disease\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e36 (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEnd-of-life care\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDeceased\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e21 (62)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e*Carers completed these questions in relation to the person they cared for.\u003c/p\u003e \u003cp\u003e□ Respondents could list more than one cancer type\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003ePatients: N\u0026thinsp;=\u0026thinsp;121 reported one cancer type, N\u0026thinsp;=\u0026thinsp;24 reported two or more cancer types.\u003c/p\u003e\u003cp\u003eCarer: N\u0026thinsp;=\u0026thinsp;25 reported one cancer type, N\u0026thinsp;=\u0026thinsp;10 reported two or more cancer types.\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThe distribution of participants across Victoria (Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e) was reasonably representative of population demography, except for a lack of participants from the northwest of the state (\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eAim 1: Knowledge and awareness of tumour genetic profiling\u003c/h3\u003e\n\u003cp\u003eAmong both patients and carers, over half the sample (n\u0026thinsp;=\u0026thinsp;107, 55%) reported that tumour genetic profiling was not discussed with them by a member of the treatment team as part of cancer treatment planning. The majority of patients (N\u0026thinsp;=\u0026thinsp;106, 68%) and carers (N\u0026thinsp;=\u0026thinsp;20, 53%) also reported that they were \u0026ldquo;not at all\u0026rdquo; or only \u0026ldquo;a little\u0026rdquo; familiar with the concept of tumour genetic profiling prior to commencing the survey (Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e). Among participants who were \u0026ldquo;a little\u0026rdquo; to \u0026ldquo;extremely familiar\u0026rdquo; (N\u0026thinsp;=\u0026thinsp;142), they had learned the most about tumour genetic profiling from health care professionals (N\u0026thinsp;=\u0026thinsp;37, 26%) and internet searches (N\u0026thinsp;=\u0026thinsp;29, 20%).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eAwareness of tumour genetic profiling\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"4\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePatient\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eCarer\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eTotal\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;157\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;38\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;195\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003eDid anyone in the treatment team discuss tumour genetic profiling with you as part of your treatment planning (\u003cem\u003eas part of treatment planning for the person care/cared for\u003c/em\u003e)?\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e36 (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8 (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e44 (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e86 (55)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e21 (55)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e107 (55)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNot that I remember\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e35 (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e9 (\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e44 (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003ePrior to commencing this survey, how familiar were you with the concept of tumour genetic profiling?\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNot at all\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e43 (\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e10 (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e53 (\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eA little\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e63 (\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e10 (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e73 (\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSomewhat\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e28 (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e12 (\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e40 (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eVery\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e15 (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e17 (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eExtremely\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e8 (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e12 (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eFrom where have you learned most about tumour genetic profiling? *\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHealth care professional\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e29 (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8 (\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e37 (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eParticipating in research studies\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e9 (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e10 (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eReading research papers\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e17 (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e19 (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSearches on the internet\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e21 (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8 (\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e29 (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAdvertising on the internet\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSocial media\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5 (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e6 (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFilms, TV, other media (e.g., newspaper articles)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e9 (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e13 (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFriends or family\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e12 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e13 (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOther\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e11 (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e13 (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e*Excluding respondents who responded, \u0026lsquo;Not at all\u0026rsquo; to \u0026ldquo;Prior to commencing this survey, how familiar were you with the concept of tumour genetic profiling?\u0026rdquo; (Patients, N\u0026thinsp;=\u0026thinsp;43; Carers, N\u0026thinsp;=\u0026thinsp;10).\u003c/p\u003e\n\u003ch3\u003eAim 2: Multifaced understanding of consumer experiences of tumour genetic profiling\u003c/h3\u003e\n\u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eUptake of profiling\u003c/h2\u003e \u003cp\u003eA total of 44 (23%) participants reported that they (N\u0026thinsp;=\u0026thinsp;35, 22%) or the person they care/cared for (N\u0026thinsp;=\u0026thinsp;9, 24%) had undergone a test for tumour genetic profiling. Of these 44 participants, 41 provided detailed information regarding their testing experiences. The majority (N\u0026thinsp;=\u0026thinsp;35, 85%) reported only one instance of testing, and 6 reported multiple instances. For the first (and often only) test, the majority of participants reported they had testing in the last five years (n\u0026thinsp;=\u0026thinsp;29, 70%), accessed testing through their treatment team (n\u0026thinsp;=\u0026thinsp;28, 68%), accessed testing at diagnosis or soon after (n\u0026thinsp;=\u0026thinsp;26, 65%), and accessed testing at no cost (n\u0026thinsp;=\u0026thinsp;26, 63%), and within 100km from home (n\u0026thinsp;=\u0026thinsp;35, 88%). Participants who had accessed testing reported a wide range of cancer diagnoses and stages, including those reporting multiple instances of testing. See Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e for a detailed description of testing circumstances.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eCircumstances first (and often only) genetic testing undertaken\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"4\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1st Experience\u003c/p\u003e \u003cp\u003e(n\u0026thinsp;=\u0026thinsp;41)*\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2nd Experience\u003c/p\u003e \u003cp\u003e(n\u0026thinsp;=\u0026thinsp;6)\u003csup\u003e□\u003c/sup\u003e\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003e3rd\u003c/p\u003e \u003cp\u003eExperience\u003c/p\u003e \u003cp\u003e(n\u0026thinsp;=\u0026thinsp;2)\u003csup\u003e+\u003c/sup\u003e\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eYear of testing\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLast five years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e29 (70%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eHow was testing arranged?\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eThrough the treatment team/medical specialist\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e28 (68%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eThrough a research project or clinical trial\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e6 (15%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eArranged on own through a private service\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (7%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOther\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4 (10%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eCost of testing\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cspan\u003e$\u003c/span\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e26 (63%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cspan\u003e$\u003c/span\u003e100\u0026ndash;1000\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e8 (20%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cspan\u003e$\u003c/span\u003e3000-\u003cspan\u003e$\u003c/span\u003e7000\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e7 (17%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eAmount of travel needed (KM)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e0-100km\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e35 (88%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e100\u0026thinsp;+\u0026thinsp;km\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5 (12%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eType of cancer test conducted for\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBreast\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e13 (32%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eProstate\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (2%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLung\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e7 (17%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eColorectal\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (7%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLeukemia\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (7%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOvarian\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (5%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSarcoma\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (5%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHead and neck\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (5%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOther\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e8 (20%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eCancer stage at time of testing\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eStage 1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e6 (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eStage 2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e6 (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eStage 3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e10 (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eStage 4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e13 (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eUnsure\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5 (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eTiming of test\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAt diagnosis or soon after\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e26 (65)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDuring initial treatment review\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDuring watchful waiting\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e7 (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eWith progression\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e*Data provided from n\u0026thinsp;=\u0026thinsp;33 patients and n\u0026thinsp;=\u0026thinsp;8 carers, includes n\u0026thinsp;=\u0026thinsp;6 who reported multiple instances.\u003c/p\u003e \u003cp\u003e□ Data provided from n\u0026thinsp;=\u0026thinsp;3 patients and n\u0026thinsp;=\u0026thinsp;3 carers. Percentages omitted due to low sample numbers.\u003c/p\u003e \u003cp\u003e \u003csup\u003e \u003cb\u003e+\u003c/b\u003e \u003c/sup\u003e Data provided from n\u0026thinsp;=\u0026thinsp;2 patients. Percentages omitted due to low sample numbers.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eUnderstanding of results and shared decision-making\u003c/h2\u003e \u003cp\u003eAmong those who reported testing, the methods used to communicate testing results were varied (see Table\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e). This is further reflected in participant comments. For example, responses ranged from \u0026ldquo;a full printed report\u0026rdquo;, and \u0026ldquo;my oncologist phoned me on a Friday evening to advise the results (amazing commitment)\u0026rdquo; through to not being provided with results or not receiving adequate support to interpret results. Participant quotes relating to communication issues are presented in Table\u0026nbsp;\u003cspan refid=\"Tab5\" class=\"InternalRef\"\u003e5\u003c/span\u003e. Understanding of results was also mixed. While 50% of participants reported understanding \u0026ldquo;most things\u0026rdquo; or \u0026ldquo;everything\u0026rdquo;, 14% reporting understanding \u0026ldquo;nothing at all\u0026rdquo;. Out of the nine carers that responded, none reported that they understood \u0026ldquo;everything\u0026rdquo; (see Table\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab4\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 4\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eCommunication and understanding of results\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"4\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePatient\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eCarer\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eTotal\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;35\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;9\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;44\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003eHow did your physician present the tumour genetic profiling test results?\u003csup\u003e□\u003c/sup\u003e\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNumbers (i.e., 6% chance)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e14 (\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e16 (\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eWords (i.e., \u0026lsquo;low risk\u0026rsquo; or \u0026lsquo;high risk\u0026rsquo;)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e19 (54)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e7 (77)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e21 (48)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGraphics (i.e., charts)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e9 (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e10 (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNo feedback/waiting for results\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5 (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e5(\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eHow much did you understand what you were told about your treatment choices based on the tumour genetic profiling test?\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNothing at all\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3 (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e6 (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSome things\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e10 (\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e12 (\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMost things\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e14 (\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3 (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e17 (\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEverything\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5 (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e5 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMissing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e□ Multiple responses could be recorded.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab5\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 5\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eParticipant quotes detailing issues experienced with communication of results.\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003eCommunication issues\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eResults not communicated\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eNever heard back from CaSP as to results of testing. \u003cb\u003eID 35, patient, 75 years, 36 years post-diagnosis, melanoma and head and neck cancer\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eLack of communication between care team\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIt takes months to get results, which is fine, but they are absolutely terrible at communicating the results with my oncologist. I'd really love to be sent a copy of their results so I can attempt to understand them better, and if they could send them to my GP and oncologist too so I'm not trying to convey messages I don't really understand. Especially when I got the results a couple of months before a doctor's appointment. Chemo destroyed my memory and I need all the medical people to keep all the other medical people in the loop. \u003cb\u003eID 88, patient, 40 years, 2 years post-diagnosis, colorectal cancer\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eDidn\u0026rsquo;t get support/help to understand results in detail\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eI think it would be useful to be able to access someone with specialised knowledge in the area to discuss the results with, in order to better understand them. our Oncologist is wonderful, but time constraints meant that I didn't get the time to discuss and understand these in detail. \u003cb\u003eID 268, carer, 45 years, 0 years post-diagnosis, neuroblastoma\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eClinician unable to interpret results\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eClinician not able to interpret results. I did that myself. \u003cb\u003eID 210\u003c/b\u003e, \u003cb\u003epatient, 49 years, 2 years post-diagnosis, lung cancer.\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eDidn\u0026rsquo;t get support to understand results, results took a long time.\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eGenetic profiling took nearly 5 months and then after the Oncologist told us in 2 sentences what it was (basically told us nothing.) We were then forced to go on Social media to learn more. We didn't get to see Genetic Counselor till 3 weeks later. \u003cb\u003eID 316, carer, 59 years, 6 years post-diagnosis, breast and kidney cancer.\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eShared decision-making scores ranged from 0\u0026ndash;4 (full range of scale), with an average score of 2.10 (SD\u0026thinsp;=\u0026thinsp;1.23). Health care teams discussing reasons for not having testing and asking if the patient wants to have testing were the poorest scoring items in the scale (see supplementary 4 for individual responses to each item).\u003c/p\u003e \u003cp\u003eUsing logistic regression analysis (N\u0026thinsp;=\u0026thinsp;38), a significant association (p\u0026thinsp;=\u0026thinsp;0.04) was observed between shared decision-making and the extent to which patients/carers understood test results, with the odds of understanding \u0026ldquo;most things/everything\u0026rdquo; 1.82 times higher (95% CI\u0026thinsp;=\u0026thinsp;1.01; 3.28) for each one-unit increase in shared decision-making.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eImpacts of tumour profiling\u003c/h3\u003e\n\u003cp\u003eImpacts of accessing tumour genetic testing were explored in the survey in several ways. Of the 44 participants who reported having a test, 30 patients and 8 carers (N\u0026thinsp;=\u0026thinsp;38) went on to report a self-rating of overall impact, from 0 (extremely negative) to 100 (extremely positive) (Fig.\u0026nbsp;\u003cspan refid=\"Fig2\" class=\"InternalRef\"\u003e2\u003c/span\u003e). The overall impact reported based on this item was highly positive (mean, SD\u0026thinsp;=\u0026thinsp;91, 14; median\u0026thinsp;=\u0026thinsp;98). A few participants reported more moderate scores (i.e., \u0026lt;\u0026thinsp;80; N\u0026thinsp;=\u0026thinsp;4), though the minimum score reported was 50 (neutral). Decision regret was also very low, with participants (n\u0026thinsp;=\u0026thinsp;38) reporting an average score of 3 (out of 100) where a higher score indicates a higher level of regret (2.7 and 3.4 for patients and carers, respectively).\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eThe majority of the 44 respondents also rated the test results as extremely useful (n\u0026thinsp;=\u0026thinsp;27, 61%) or useful (n\u0026thinsp;=\u0026thinsp;5, 11%). The main positive impacts included increased knowledge and understanding (n\u0026thinsp;=\u0026thinsp;30, 68%), and more personalised treatment options (n\u0026thinsp;=\u0026thinsp;23, 52%). Relief about the future (n\u0026thinsp;=\u0026thinsp;15, 34%), and information relevant to life planning (n\u0026thinsp;=\u0026thinsp;11, 25%) were also reported (Table\u0026nbsp;\u003cspan refid=\"Tab6\" class=\"InternalRef\"\u003e6\u003c/span\u003e). Open-ended responses also reflected knowledge and personalised treatment options as being positive impacts (Table\u0026nbsp;\u003cspan refid=\"Tab7\" class=\"InternalRef\"\u003e7\u003c/span\u003e). One participant felt they had a survival benefit as a result, saying \u0026ldquo;without it\u0026hellip;I\u0026rsquo;d be dead now\u0026rdquo;. Others discussed reduced anxiety, feelings of empowerment, and gratitude for avoiding unnecessary treatment. Gratitude was also expressed among those who were in a position to self-fund tests (e.g., \u0026ldquo;I was grateful to have the financial capacity to access this and realise many wouldn't).\u0026rdquo;\u003c/p\u003e \u003cp\u003eWhen asked about drawbacks of testing (see Table\u0026nbsp;\u003cspan refid=\"Tab6\" class=\"InternalRef\"\u003e6\u003c/span\u003e), 40% reported no drawbacks at all. Among the remaining participants, financial burden (20%), confusion (11%) and distress (9%) were reported. Further drawbacks were extrapolated from the open-ended questions, where participants commented that they experienced medical teams being dismissive, delays to treatments due to delays in results and results that aren\u0026rsquo;t necessarily helpful or are disappointing. One carer also noted they felt fear about the initial biopsy (Table\u0026nbsp;\u003cspan refid=\"Tab7\" class=\"InternalRef\"\u003e7\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab6\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 6\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eBenefits and Drawbacks of TGP\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"4\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePatient\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eCarer\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eTotal\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;35\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;9\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;44\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003eHow useful were the test results to you \u003cem\u003e(to the person you care/cared for)\u003c/em\u003e?\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNot at all useful\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSomewhat useful\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eUseful\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e5 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eExtremely useful\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e22 (63)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e5 (56)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e27 (61)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMissing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5 (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e6 (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eWhat do you feel you have gained from your test results\u003c/b\u003e \u003cb\u003e(What do you think was gained from the test results)\u003c/b\u003e\u003cb\u003e?\u003c/b\u003e \u003csup\u003e□\u003c/sup\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIncreased knowledge and understanding\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e23 (66)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e7 (78)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e30 (68)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eRelief from uncertainty about the future\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e13 (\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e15 (\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMore personalised treatment option\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e19 (54)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e23 (52)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eInformation relevant to life planning\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e9 (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e11 (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOther\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNot applicable \u0026ndash; test results are not useful\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eWhat do you feel were the drawback from your test and/or test results\u003c/b\u003e \u003cb\u003e(from the test and/or test results)?\u003c/b\u003e \u003csup\u003e\u003cb\u003e□\u003c/b\u003e\u003c/sup\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFinancial burden\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e8 (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e9 (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIncreased uncertainty\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePsychological distress\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eConfusion\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3 (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e5 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOther\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNot applicable \u0026ndash; no drawbacks experienced\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e16 (46)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e18 (\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e□ Multiple responses could be recorded.\u003c/p\u003e \u003cp\u003e*These items summed to make Decision Regret Scale\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab7\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 7\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eQuotes illustrating benefits and drawbacks of Tumour Genetic Profiling\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003ePositive Impacts\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eKnowledge\u003c/b\u003e\u003c/p\u003e \u003cp\u003e\u003cb\u003eEmpowerment\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFor me, I liked having as much knowledge about what was happening to me as possible. It helped me to cope and made me feel empowered to make the best decisions for me going forward. It also helped me to talk about what had happened to my family and colleagues. \u003cb\u003eID 29, patient, 37 years, 4 years post-diagnosis, colorectal cancer\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eKnowledge and treatment decision- making\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eGenetic profiling provided me with crucial information regarding my tumour type and treatment type required. It helped reduce anxiety knowing I had some key information to assist me with decision-making for ongoing treatment and my pathway ahead. \u003cb\u003eID 231, patient, 52 years, 4 years post-diagnosis, breast cancer\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003ePersonalised treatment options, treatment decision-making\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFor me the genetic testing was part of my Allogenic Stem Cell Transplant procedure and since then when I have had an issue my Haematologist has been able to discount certain conditions as we have access to this valuable information. \u003cb\u003eID 78, patient, 66 years, 10 years post-diagnosis, leukemia\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003ePersonalised treatment options, No equity of access\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eOncotype Dx test was not subsidized by Medicare so my oncologist could not mention it, as many people can't afford it and then would be very distressed if they knew about it without being able to have it. luckily i found out about it on my own through internet and Pubmed research and asked my oncologist about having it - to his and my huge relief hospital pathology could easily organize it. The results were essential in deciding my future treatment. \u003cb\u003eID 80, patient, 60 years, 10 years post-diagnosis, breast cancer\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003ePersonalised treatment options. No equity of access\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMy oncologist phoned me on a Friday evening to advise the results (amazing commitment) which supported my decision to not have chemotherapy. My diagnosis was at the very start of the pandemic, an additional stress. I was grateful to have the financial capacity to access this and realise many wouldn't. \u003cb\u003eID 82, patient, 66 years, 4 years post-diagnosis, breast cancer\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003ePersonalised treatment options, reduced unnecessary treatment\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePrior to test I was receiving a generic treatment. Post test I was able to receive a targeted treatment. Saved a lot of radio and chemo. \u003cb\u003eID 355, patient, 50 years, 1-year post-diagnosis, breast cancer and colorectal cancer\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003ePersonalised treatment options, reduced unnecessary treatment\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eBiopsy was taken by the surgeon at time of diagnosis. No consent for genetic profiling was requested. I have no problem with this as the surgeon was able to fast track access to targeted treatment. \u003cb\u003eID 202\u003c/b\u003e, \u003cb\u003ecarer, 51 years, 1-year post-diagnosis, lung cancer\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eSurvival benefit\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eWithout it and the service provided by the Garvan Institute in connecting me to a trial I would be dead by now instead of enjoying every day. I am so thankful this exists! \u003cb\u003eID 352, patient, 59 years, 2 years post-diagnosis, pancreatic cancer\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eNegative Impacts\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eLack of communication, dismissive\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eI changed oncologist because my first one was extremely dismissive. My second oncologist was the one who organised genetic testing and she was quite frustrated that the previous oncologist hadn't done it. It takes months to get results, which is fine, but they are absolutely terrible at communicating the results with my oncologist. I'd really love to be sent a copy of their results so I can attempt to understand them better, and if they could send them to my GP and oncologist too so I'm not trying to convey messages I don't really understand. Especially when I got the results a couple of months before a doctor's appointment. Chemo destroyed my memory and I need all the medical people to keep all the other medical people in the loop. \u003cb\u003eID 88, patient, 40 years, 2 years post-diagnosis, colorectal cancer\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eNo equity of access\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eI wish I had been given the option, but I found in the public system these things are not discussed because there is an out-of-pocket cost. Then I would have found out if there were other treatments that may have been beneficial. I also think that in an age of increasingly personalised medicine, that there should be equity of access through government subsidy - otherwise you have one group of people who can have access to this information because they can afford it. \u003cb\u003eID 46, patient, 50 years, 5 years post-diagnosis, breast cancer\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eCan\u0026rsquo;t always help\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIn the end the cancer is there, and genomics won't always help. Quite often knowing the genomics can't stop the cancer spreading, but you need to know what the facts are. Sometimes Genomics are just the awful facts. \u003cb\u003eID 175, carer, 63 years, 40 years post-diagnosis, breast and lung cancer and lymphoma\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eDelay in results meant more treatment received.\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIf the results had been quicker it would have changed the way the cancer team treated and would have meant less operations and less stress. This was the second breast cancer and the slow result (5 months) also caused issues and long delays to treat the 3rd cancer from the Gene (Kidney cancer). \u003cb\u003eID 316, carer, 59 years, 6 years post-diagnosis, breast and kidney cancer\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eDisappointment, can\u0026rsquo;t always help\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDisappointment \u0026ndash; no new treatment options available. \u003cb\u003eID 199, patient, 51 years, 12 years post diagnosis, thyroid cancer.\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eCan\u0026rsquo;t always help\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDrug development and effective treatments to target tumour mutation not progressed enough - mutation identified considered ultra-rare oncogene. \u003cb\u003eID 62, patient, 40 years, 14 years post diagnosis, Sarcoma\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eFear\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFear of initial biopsy. \u003cb\u003eID322, carer, 66 years, not reported\u003c/b\u003e,\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e\n\u003ch3\u003eReasons for not having testing\u003c/h3\u003e\n\u003cp\u003eThe main reason reported for not having undergone testing was a lack of awareness (n\u0026thinsp;=\u0026thinsp;88, 83%) (Table\u0026nbsp;\u003cspan refid=\"Tab7\" class=\"InternalRef\"\u003e7\u003c/span\u003e). This was also reflected in participant comments: \u003cem\u003e\u0026ldquo;Tumour genetic profiling was not discussed with me, so I wasn't aware it was potentially available to me\u0026rdquo;\u003c/em\u003e (ID 41, patient, 67 years, 3 years post-diagnosis, breast cancer) and \u003cem\u003e\u0026ldquo;It was not raised as an option by my treatment team. I would have been interested in having it if I knew at the time\u0026rdquo;\u003c/em\u003e (ID 46, patient, 50 years, 5 years post-diagnosis, breast cancer).\u003c/p\u003e \u003cp\u003eThe second most common reason was the treatment team not seeing the benefit (n\u0026thinsp;=\u0026thinsp;19, 18%). Some participants reported feelings of being \u0026ldquo;discouraged\u0026rdquo; to have testing and \u0026ldquo;pressured\u0026rdquo; to have treatment. Participants commented: \u0026ldquo;\u003cem\u003eThe benefits were not explained to me and I was discouraged from having a test even though the multi-disciplinary team recommended it as an option for me\u0026rdquo;(\u003c/em\u003e ID 164, patient, 63 years, 2 years post-diagnosis, breast cancer); \u0026ldquo;\u003cem\u003eTreatment team pressured me to go ahead with treatment without the test and would not explain what genomic testing would tell me\u0026rdquo;\u003c/em\u003e (ID 419, patient, 63 years, 2 years post-diagnosis, breast cancer) and \u0026ldquo;\u003cem\u003eThe treatment team did not bring it up, we did. They offered to do it but said it would be time consuming and expensive\u0026rdquo;\u003c/em\u003e (ID 240, carer, 51 years, 0 years post-diagnosis, endometrial cancer).\u003c/p\u003e \u003cp\u003eAccess issues were also identified, with 11% (n\u0026thinsp;=\u0026thinsp;12) reporting there were no clinical trials available and 4% (n\u0026thinsp;=\u0026thinsp;4) reporting they could not afford testing. No participants reported avoiding testing due to worry or stress, views of friends/family, or religious reasons.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab8\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 8\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eReasons for not undergoing tumour genetic profiling\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"4\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eReason\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePatient\u003c/p\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;85\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eCarer\u003c/p\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;21\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eTotal\u003c/p\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;106\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eN (%)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eN (%)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eN (%)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNot aware of it\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e73 (86)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e15 (71)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e88 (83)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDo not understand it\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5 (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e5 (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDid not feel it would benefit\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTreatment team did not feel it would have benefit\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e13 (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e6 (\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e19 (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFelt it would cause worry or stress\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCould not afford it\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePrivacy concerns\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCOVID-19\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCould not access it through Medicare\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNo clinical trials available\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5 (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e7 (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e12 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eWould have to travel too far\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eViews of friends and family\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eReligious reasons\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOther (e.g., diagnosed too long ago, unavailable, discouraged).\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e6 (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e6 (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eAim 3: Improving access and delivery of tumour genetic profiling in Victoria\u003c/h2\u003e \u003cp\u003eAmong all survey respondents, the top priorities for improving tumour genetic profiling in Victoria were government subsidised tests, access to health professionals, and education resources that could help them understand what testing is, and the results once obtained (Table\u0026nbsp;\u003cspan refid=\"Tab9\" class=\"InternalRef\"\u003e8\u003c/span\u003e). When asked to select the most important strategy for improving tumour genetic profiling in Victoria, the majority of participants indicated government subsidised tests (n\u0026thinsp;=\u0026thinsp;71, 39%), followed by access to health professionals (n\u0026thinsp;=\u0026thinsp;53, 29%), education resources (n\u0026thinsp;=\u0026thinsp;48, 27%), and access to genetic counsellors (n\u0026thinsp;=\u0026thinsp;9, 5%).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab9\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 8\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eImportance of strategies to improve tumour genetic profiling\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"6\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePatient\u003c/p\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;145\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eCarer\u003c/p\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;36\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eHad testing\u003c/p\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;44\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003eDid not have testing*\u003c/p\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;106\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\"\u003e \u003cp\u003eTotal\u003c/p\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;181\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eN (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eN (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eN (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eN (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eN (%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"6\" nameend=\"c6\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eTests subsidised by the government\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eSomewhat important\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e19 (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3 (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e14 (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e22 (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eExtremely important\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e122 (84)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e31 (86)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e36 (82)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e84 (79)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e153 (85)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"6\" nameend=\"c6\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eAccess to health professionals with improved knowledge of genetic testing\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eSomewhat important\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e21 (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e3 (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e17 (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e23 (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eExtremely important\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e117 (81)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e33 (92)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e32 (73)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e81 (76)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e150 (83)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"6\" nameend=\"c6\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eEducation to understand genetic testing, including differences between tumour genetic profiling and germline testing\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eSomewhat important\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e30 (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e5 (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e7 (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e22 (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e35 (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eExtremely important\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e109 (75)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e30 (83)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e29 (66)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e76 (72)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e139 (77)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"6\" nameend=\"c6\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eAccess to genetic counsellors\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eSomewhat important\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e33 (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e7 (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e8 (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e26 (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e40 (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eExtremely important\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e93 (64)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e26 (72)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e26 (59)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e62 (58)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e119 (66)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"6\" nameend=\"c6\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eAccess to research studies\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eSomewhat important\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e44 (\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e11 (\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e9 (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e34 (\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e55 (\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eExtremely important\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e87 (60)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e23 (64)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e28 (64)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e56 (53)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e110 (61)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"6\" nameend=\"c6\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eImproving the consent process in research studies\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eSomewhat important\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e40 (\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e10 (\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e7 (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e32 (\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e50 (\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eExtremely important\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e49 (\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e17 (47)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e15 (\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e33 (\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e66 (\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eNB. Scale included: Not at all, Somewhat unimportant, Neutral, Somewhat important, Extremely, I don\u0026rsquo;t know.\u003c/p\u003e \u003cp\u003e*Does not include participants who responded \u0026lsquo;I don\u0026rsquo;t know\u0026rsquo;\u003c/p\u003e \u003cp\u003eTreatment teams were preferred by the majority of people (N\u0026thinsp;=\u0026thinsp;118, 65%) for providing information on results, compared to a centralised service with expertise in tumour profiling (n\u0026thinsp;=\u0026thinsp;63, 35%). Though it was noted in participant comments that a centralised service to ask questions, given treatment team availability, would be appreciated: \u0026ldquo;\u003cem\u003eWhilst I would like to access my results from my treating team I would also prefer a centralized service to be able to ask for questions and more information about the results if needed due to the limitations of a clinicians time and in some cases knowledge\u0026rdquo;\u003c/em\u003e (ID 44, patient, 41 years, 9 years post-diagnosis, lung cancer). Over half of participants also reported that they would trust information about tumour genetic profiling from healthcare professionals (n\u0026thinsp;=\u0026thinsp;182, 93%), research studies (n\u0026thinsp;=\u0026thinsp;113, 58%), and research papers (n\u0026thinsp;=\u0026thinsp;109, 56%) (Table\u0026nbsp;\u003cspan refid=\"Tab10\" class=\"InternalRef\"\u003e9\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab10\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 9\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003ePreferred source of tumour genetic profiling information\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"4\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePatient\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eCarer\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eTotal\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;157\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;38\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;195\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eFrom where would you trust to receive information about tumour genetic profiling?\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHealth care professional\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e146 (93)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e36 (95)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e182 (93)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eParticipating in research studies\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e96 (61)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e17 (45)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e113 (58)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eReading research papers\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e87 (55)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e22 (58)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e109 (56)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSearches on the internet\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e34 (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e11 (\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e45 (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAdvertising on the internet\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (0.6)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1 (0.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOther forms of advertising\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSocial Media\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (0.6)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3 (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFilms, TV, other media (e.g., newspaper articles)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e8 (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e9 (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFriends or family\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e14 (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e16 (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOther\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e6 (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e7 (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e□ Multiple responses could be recorded.\u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003e This study aimed to inform the development of patient-centred approaches to genetic profiling by providing insights into current awareness levels about tumour genetic profiling, lived experiences of accessing and utilising tumour genetic profiling (or not), and priorities for improving access and delivery of tumour profiling among cancer patients and carers in Victoria, Australia. The findings highlight significant gaps in consumer knowledge and access, the benefits of shared decision-making, and key strategies for improving equitable access to tumour genetic profiling services. These results have important implications for healthcare providers, policy makers, and researchers aiming to enhance the delivery of personalised cancer care. The points considered most important by the CRG were recorded (see supplementary file 5) and are discussed below.\u003c/p\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eAwareness and Access to Tumour Genetic Profiling\u003c/h2\u003e \u003cp\u003eA major barrier identified in this study was the lack of awareness among consumers regarding tumour genetic profiling. More than half of respondents (55%) reported that tumour genetic profiling was not discussed with them by their treatment team, and 83% of those who had not undergone testing cited lack of awareness as a key reason. These findings align with previous research indicating that many patients remain uninformed about genetic testing options and their potential benefits (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). Enhancing clinician-patient communication about tumour genetic profiling, including routine discussions within oncology consultations, could help address this gap. However, clinicians may be hesitant to discuss testing if perceived clinical utility is low (\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e). This is problematic from the perspective of patient-centred care, as patients and carers may have different views about clinical utility than their care team. A recent survey of 602 Australians undergoing cancer genetic sequencing (probands) and their relatives showed that more than half of the sample population thought people would still want to know about single gene conditions that have no prevention or treatment options (\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e). Further, in our study, there were psychological benefits of testing, with some participants reporting that having testing made them feel empowered and helped them to cope. Overall, there seems to be a clear need for education across the board on the use and benefits of testing. Clinicians will also likely need increased support interpreting results and testing will need to become more widely available before they commence conversations about tumour genetic profiling as common practice (\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eAlthough improving in Australia, access to tumour genetic profiling remains an issue(\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). Disparities in access were evident in the current study. While some patients benefited from tumour genetic profiling at no cost, others faced financial barriers, with some self-funding testing due to limited public funding. Government-subsidised testing was identified as the highest-priority strategy for improving access, with 85% of respondents rating it as extremely important. These findings reinforce the need for policy changes to expand publicly funded tumour genetic profiling and reduce socioeconomic disparities.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003eConsumer Experiences with Tumour Genetic Profiling\u003c/h2\u003e \u003cp\u003eFor those who had undergone tumour genetic profiling, the majority reported positive experiences, particularly in terms of increased knowledge and personalised treatment options. The reported decisional regret was extremely low, further supporting the value of tumour genetic profiling in cancer care. However, there were notable challenges related to understanding results, with 14% of respondents reporting no understanding of their test results at all. The study identified an association between shared decision-making and better understanding of test results. This finding underscores the importance of clinician engagement and patient and caregiver involvement in the decision-making process. Although decision regret was low, clinicians should be aware that for some consumers, genomic testing presented them with just the \u0026ldquo;awful facts\u0026rdquo;. Clear and supportive communication from healthcare providers, including access to genetic counsellors and structured educational resources, could enhance patient and caregiver comprehension and overall experience with tumour genetic profiling.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003ePriorities for Improving Tumour Genetic Profiling Access and Delivery\u003c/h2\u003e \u003cp\u003eIn addition to public funding for tumour genetic profiling, participants emphasised the need for increased clinician education and access to health professionals knowledgeable about genetic testing. Many respondents reported that their healthcare providers did not offer tumour genetic profiling or did not discuss its potential benefits. Education initiatives aimed at oncologists and other healthcare professionals could improve clinician confidence in discussing and recommending tumour genetic profiling to patients. As part of this, clinicians should be made aware of the impending ban on the use of adverse testing by life insurers in Australia (\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e), as multiple qualitative responses implied worries about such when considering undergoing testing.\u003c/p\u003e \u003cp\u003eParticipants also expressed strong support for a centralised service to provide additional information and support regarding tumour genetic profiling. While 65% of respondents preferred to receive test results from their treatment team, 35% indicated interest in a specialised centralised service for testing related queries. This reflects the need for a hybrid approach, combining direct clinician involvement with accessible, specialised support services to enhance patient understanding and decision-making.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003eImplications for Healthcare Professionals and Policy Makers\u003c/h2\u003e \u003cp\u003eThese findings highlight the critical role of healthcare professionals in facilitating patient access to and understanding of tumour genetic profiling. Training programs for oncologists, general practitioners, nursing and allied health professionals should include education on how to effectively communicate the benefits and limitations of tumour genetic profiling, as well as the importance of shared decision-making. Previous research in oncology has shown that training on shared decision-making can lead to behaviour change among clinicians (\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e). Providing patients with question prompt lists is also likely to improve patient-centred communication (\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eFor policy makers, this study underscores the urgency of expanding public funding for tumour genetic profiling to ensure equitable access. The cost-effectiveness of genetic testing in oncology has been demonstrated in international studies, with evidence suggesting that subsidising tests such as Oncotype DX can reduce the need for costly chemotherapy treatments (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e). Avoiding unnecessary chemotherapy also reduces the financial and health burden associated with managing the short and long-term side-effects of chemotherapy (e.g., fatigue, cardio-toxicity (\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e)). Incorporating holistic cost-benefit analyses in the Australian healthcare context that take health system and patient costs into account could support policy changes that increase funding for tumour genetic profiling.\u003c/p\u003e \u003cp\u003e Additionally, addressing the identified communication gaps by implementing national guidelines for discussing genetic testing in cancer care could standardise practice and improve patient experiences. Policymakers should also consider supporting infrastructure for centralised genetic services that can provide expert guidance alongside routine oncology care.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003eLimitations and Future Research\u003c/h2\u003e \u003cp\u003eWhile this study provides important insights, several limitations should be considered. The cross-sectional design does not allow for causal inferences, and the sample, though diverse, was skewed toward highly educated individuals and those with breast cancer. Given that breast cancer patients typically have greater access to support due to high funding levels (\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e), the experiences reported here may not be fully representative of other cancer populations. Future research should aim to capture a broader range of cancer experiences and explore differences in genetic testing access across diverse demographic groups.\u003c/p\u003e \u003cp\u003eAnother limitation was the reliance on self-reported data, which may be subject to recall bias. Additionally, the relatively small number of participants who had undergone tumour genetic profiling limited the statistical power for subgroup analyses. Future longitudinal studies tracking patient experiences over time would provide more comprehensive insights into the long-term impact of tumour genetic profiling.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis consumer-led study highlights the substantial gaps in awareness and access to tumour genetic profiling, the benefits of shared decision-making, and the priorities for improving equitable service delivery. Findings reinforce the need for increased public funding, enhanced clinician education, and better communication strategies to ensure patients receive timely and comprehensible information about tumour genetic profiling. The study provides actionable insights for healthcare professionals and policy makers seeking to implement person-centred, equitable, and ethical models of genetic testing in oncology.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eTGP: Tumour Genetic Profiling\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eVCCC: Victorian Comprehensive Cancer centre\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eCRG: Consumer Reference Group\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eSD: Standard Deviation\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eEORTC-QLQ-C30: European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30\u003c/p\u003e\n\u003cp\u003eREDCap: Research Electronic Data Capture\u003c/p\u003e\n\u003cp\u003eGP: General Practitioner\u003c/p\u003e\n\u003cp\u003ePICO: Patient/Population, Intervention, Comparison, Outcome\u003c/p\u003e\n\u003cp\u003eFINER: Feasible, Interesting, Novel, Ethical, Relevant\u003c/p\u003e\n\u003cp\u003eGRIPP2: Guidance for Reporting Involvement of Patients and the Public (Version 2)\u003c/p\u003e\n\u003cp\u003eID: Identifier (used for anonymised participant quotes).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAUD: Australian Dollar\u0026nbsp;\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cem\u003eEthics Approval, Consent to Participate, and Consent for Publication\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eEthics approval was obtained from the University of Melbourne Human Ethics Committee (#27758). All participants provided written informed consent online via REDCap and have been informed that no identifying details will be published in this manuscript. Our study adhered to the\u0026nbsp;Declaration of Helsinki.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAvailability of data and materials\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eAll de-identifiable data and materials associated with this project can be requested by contacting the corresponding author.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eCompeting Interests\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe authors have no competing interests to declare.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eFunding\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe Personalised Cancer Care Consumer-led Research Project was supported by the VCCC Alliance as part of the Strategic Program Plan 2021-2024 with funding from the Victorian Government.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAuthor contributions\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eConceptualization: All authors\u003c/p\u003e\n\u003cp\u003eInvestigation: All authors\u003c/p\u003e\n\u003cp\u003eMethodology: All authors\u003c/p\u003e\n\u003cp\u003eFormal analysis: CES, TJ\u003c/p\u003e\n\u003cp\u003eProject administration: GD, CES, JMB, NC, MB, MB, KM\u003c/p\u003e\n\u003cp\u003eWriting – original draft: CES, SS\u003c/p\u003e\n\u003cp\u003eWriting – review \u0026amp; editing: All authors\u003c/p\u003e\n\u003cp\u003eAll authors read and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAcknowledgements\u003c/em\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eWe gratefully acknowledge the valuable contributions of our consumer advisors, whose expertise and generosity extend across many organisations. In addition to their roles on this project, they serve in a range of advisory capacities that highlight the breadth of their impact. We also acknowledge the possibility that these organisations may have provided training or support to our consumer team over time.\u003c/p\u003e\n\u003cp\u003eKathleen Minas, Naveena Nekkalapudi, and Jonathan Granek are members of the Consumer Advisory Panel and Consumer Program at the Walter and Eliza Hall Institute of Medical Research. Naveena Nekkalapudi also serves as an active consumer representative with Breast Cancer Network Australia (BCNA). Jonathan Granek is the Founding Director and Chair of the EHE Rare Cancer Foundation Australia and holds additional roles as a member of the Community Advisory Committee and Consumer Register at the Peter MacCallum Cancer Centre; Ordinary Member (Consumer) of the Australian and New Zealand Sarcoma Association; Allied Health Professional (Consumer Advocate) with the Connective Tissue Oncology Society; and Consumer Representative and Advocacy Group Partner with Omico (Australian Genomic Cancer Medicine Centre). Melissa Sheldon is Co-chair of the Community Action Team (ComAct) within the Melanoma \u0026amp; Skin Cancer Advocacy Network and serves as a Consumer Advisor on the Consumer Advisory Committee (CAC) at Echuca Regional Health (ERH). Kenneth Young is a volunteer with MPN Alliance Australia.\u003c/p\u003e\n\u003cp\u003eWe also sincerely thank all the patients and carers who generously shared their experiences by participating in this study, as well as the organisations, support groups, and networks across Victoria who assisted with recruitment and survey dissemination.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eNational Cancer Institute. Biomarker Testing for Cancer Treatment 2021 [updated December 14th 2021. Available from: https://www.cancer.gov/about-cancer/treatment/types/biomarker-testing-cancer-treatment.\u003c/li\u003e\n\u003cli\u003eMateo J, Steuten L, Aftimos P, Andr\u0026eacute; F, Davies M, Garralda E, et al. Delivering precision oncology to patients with cancer. Nature Medicine. 2022;28(4):658-65.\u003c/li\u003e\n\u003cli\u003eSmith-Uffen M, Bartley N, Davies G, Best M. Motivations and barriers to pursue cancer genomic testing: A systematic review. 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JAMA Oncol. 2017;3(1):92-100.\u003c/li\u003e\n\u003cli\u003eBerdunov V, Cuyun Carter G, Laws E, Luo R, Russell CA, Campbell S, et al. Cost-Effectiveness Analysis of the Oncotype DX Breast Recurrence Score(\u0026reg;) Test from a US Societal Perspective. Clinicoecon Outcomes Res. 2024;16:471-82.\u003c/li\u003e\n\u003cli\u003eDi Nardo P, Lisanti C, Garutti M, Buriolla S, Alberti M, Mazzeo R, et al. Chemotherapy in patients with early breast cancer: clinical overview and management of long-term side effects. Expert Opinion on Drug Safety. 2022;21(11):1341-55.\u003c/li\u003e\n\u003cli\u003eMcIntosh SA, Alam F, Adams L, Boon IS, Callaghan J, Conti I, et al. Global funding for cancer research between 2016 and 2020: a content analysis of public and philanthropic investments. The Lancet Oncology. 2023;24(6):636-45.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-cancer","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bcan","sideBox":"Learn more about [BMC Cancer](http://bmccancer.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bcan/default.aspx","title":"BMC Cancer","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Consumer-led, patient and public involvement, tumour genetic profiling, somatic testing, molecular testing, precision oncology, personalised care, cancer, shared decision making, psycho-oncology","lastPublishedDoi":"10.21203/rs.3.rs-6508330/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6508330/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eTumour 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.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eA 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.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eOf the 181 respondents (n\u0026thinsp;=\u0026thinsp;36 carers, n\u0026thinsp;=\u0026thinsp;145 patients), 23% (n\u0026thinsp;=\u0026thinsp;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\u0026thinsp;=\u0026thinsp;30, 68%) and personalised treatment options (n\u0026thinsp;=\u0026thinsp;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\u0026thinsp;=\u0026thinsp;0.04). The primary barriers to uptake were lack of awareness (n\u0026thinsp;=\u0026thinsp;88, 83%) and lack of perceived benefit from the treatment team (n\u0026thinsp;=\u0026thinsp;19, 18%). Key strategies for improvement identified by participants included government-subsidised testing and improved patient and clinician education.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eThis 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.\u003c/p\u003e","manuscriptTitle":"Experiences Accessing and Receiving Tumour Genetic Profiling in Victoria: A Consumer-Led Cross-Sectional Survey Study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-06-17 14:43:23","doi":"10.21203/rs.3.rs-6508330/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-07-31T15:42:17+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-07-08T21:12:08+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-07-01T21:50:07+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"225521866010781176672837495368329212744","date":"2025-06-24T18:06:40+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-06-24T13:11:12+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"323736176096084903110625816497616023376","date":"2025-06-23T12:31:46+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"109542398509199392028620400817809273015","date":"2025-06-13T13:37:23+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-06-12T10:25:28+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-06-04T11:52:01+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2025-05-13T15:34:24+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-05-13T02:06:52+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Cancer","date":"2025-05-13T02:05:46+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-cancer","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bcan","sideBox":"Learn more about [BMC Cancer](http://bmccancer.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bcan/default.aspx","title":"BMC Cancer","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"1617696b-e03c-4f69-8807-742e77bc2d2f","owner":[],"postedDate":"June 17th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-04-15T08:25:29+00:00","versionOfRecord":[],"versionCreatedAt":"2025-06-17 14:43:23","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-6508330","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6508330","identity":"rs-6508330","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}