The TRIO Framework : Conceptual insights into family caregiver involvement and influence throughout cancer treatment decision-making

This research was supported under Australian Research Council's Discovery Projects funding scheme (Project Number: DP140103838).Peer reviewedPostprin

Sharing vs. Caring - The relative impact of sharing decisions versus managing emotions on patient outcomes

Objective: To assess the relative impact of cognitive and emotional aspects of shared decision making (SDM) on patient outcomes. Methods: Cognitive and emotional aspects of SDM in consultations between 20 oncologists and 55 early breast cancer patients were coded using the Observing Patient Involvement (OPTION) scale and the Response to Emotional Cues and Concerns (RECC) coding system, plus blocking and facilitating behaviour scales. Patient outcomes including anxiety, decisional conflict, and satisfaction with: i) the decision, ii) the consultation, and iii) doctor SDM skills, were assessed. Relationships between cognitive and emotional aspects of SDM, and patient outcomes were examined using hierarchical regression. Results: The OPTION score predicted satisfaction with doctor SDM skills 2 weeks post-consultation (p=.010), and with the treatment decision 4 months post-consultation (p=.004). Emotional blocking predicted decisional conflict (p=.039), while the number of emotional cues emitted (p=.003), and the degree of empathy provided (p=.011), predicted post-consultation anxiety. Conclusion: Cognitive and emotional aspects of SDM in oncology consultations have different effects on various patient outcomes. Practice Implications: It is important that doctors focus on both sharing decisions and managing emotions in consultations. Communication skills training addressing both these areas may be an effective way to improve diverse patient outcomes.None

Psychological impact of comprehensive tumor genomic profiling results for advances cancer patients

Objective Comprehensive tumor genomic profiling (CTGP) is increasingly used to personalize treatments, providing hope, but potentially disappointment, for patients. We explored psychological outcomes in patients with advanced, incurable cancer, after receiving CTGP results. Methods Participants with advanced, incurable cancer (n = 560, mean age 56, 43% university educated) in this longitudinal substudy of the Molecular Screening and Therapeutics Program (MoST), completed questionnaires before and after receiving CGP results. MoST participants, recruited from Australian oncology clinics, undergo CTGP, and if there are actionable findings, are offered treatment in a related therapeutic trial if available. Results Patients who received actionable results, (n = 356, 64%) had lower gene-related distress (MICRA) (p \u3c 0.001) and Impact of Events scores (p = 0.039) than patients with non-actionable results. Those with actionable results offered ensured access to tailored treatment (n = 151) reported lower anxiety (p = 0.002) and depressive symptoms (p = 0.01) and greater hope (p = 0.002) than those not offered. Positive attitudes towards uncertainty and higher self-efficacy for coping with results were associated with lower psychological distress and uncertainty, and higher hope and satisfaction with the decision to have CTGP (ps=0.001–0.047). Those with higher knowledge reported greater anxiety (p = 0.034). Conclusion Receiving a non-actionable CTGP result, or an actionable result without ensured access to treatment, may cause increased distress in advanced cancer patients. Coping style was also associated with distress. Practice implications Pre-testing assessment and counseling addressing attitudes toward uncertainty and self-efficacy, and post-CTGP result support for patients receiving a non-actionable result or who receive an actionable results without ensured access to treatment, may benefit patients

Correction to: Navigate: A study protocol for a randomised controlled trial of an online treatment decision aid for men with low-risk prostate cancer and their partners

© 2021, The Author(s). Following publication of the original article [1], we were notified of a typo in the spelling of the 10th author name, originally spelt as “Cavdon” instead of “Cavedon” (i.e., missing “e”). The original article has been corrected

Navigate: A study protocol for a randomised controlled trial of an online treatment decision aid for men with low-risk prostate cancer and their partners

© 2021, The Author(s). Background: Active surveillance (AS) is the disease management option of choice for low-risk prostate cancer. Despite this, men with low-risk prostate cancer (LRPC) find management decisions distressing and confusing. We developed Navigate, an online decision aid to help men and their partners make management decisions consistent with their values. The aims are to evaluate the impact of Navigate on uptake of AS; decision-making preparedness; decisional conflict, regret and satisfaction; quality of illness communication; and prostate cancer-specific quality of life and anxiety. In addition, the healthcare cost impact, cost-effectiveness and patterns of use of Navigate will be assessed. This paper describes the study protocol. Methods: Three hundred four men and their partners are randomly assigned one-to-one to Navigate or to the control arm. Randomisation is electronically generated and stratified by site. Navigate is an online decision aid that presents up-to-date, unbiased information on LRPC tailored to Australian men and their partners including each management option and potential side-effects, and an interactive values clarification exercise. Participants in the control arm will be directed to the website of Australia’s peak national body for prostate cancer. Eligible patients will be men within 3 months of being diagnosed with LRPC, aged 18 years or older, and who are yet to make a treatment decision, who are deemed eligible for AS by their treating clinician and who have Internet access and sufficient English to participate. The primary outcome is self-reported uptake of AS as the first-line management option. Secondary outcomes include self-reported preparedness for decision-making; decisional conflict, regret and satisfaction; quality of illness communication; and prostate cancer-specific quality of life. Uptake of AS 1 month after consent will be determined through patient self-report. Men and their partners will complete study outcome measures before randomisation and 1, 3 and 6 months after study consent. Discussion: The Navigate online decision aid has the potential to increase the choice of AS in LRPC, avoiding or delaying unnecessary radical treatments and associated side effects. In addition, Navigate is likely to reduce patients’ and partners’ confusion and distress in management decision-making and increase their quality of life. Trial registration: Australian and New Zealand Clinical Trial Registry ACTRN12616001665426. Registered on 2 December 2016. All items from the WHO Trial Registration Data set can be found in this manuscript

Psychological outcomes in advanced cancer patients after receiving genomic tumor profiling results

Background: Comprehensive tumor genomic profiling (CGP) offers hope for personalized treatment for cancer patients when other treatment options have been exhausted. However, receipt of nonactionable or ambiguous results could be an ongoing source of distress. We investigated patterns of hope, anxiety, depression, and CGP-specific anxiety in advanced cancer patients after receiving CGP results and 2–3months later. Method: Participants were enrolled in a longitudinal psychosocial substudy, embedded in the Molecular Screening and Therapeutics Program, and had advanced solid cancers of any histological type with sufficient and accessible tissue for CGP. At T0 (before receiving CGP results), 1,431 participants completed sociodemographic, disease and psychosocial measures. At T1 (1–4 weeks after receiving CGP results) and T2 (2–3 months post-T1), 374 participants completed psychological outcome measures. Predictors of outcomes at T2 were identified using multinomial logistic regression. Results: Approximately 75% of participants did not experience significant hopelessness or distress at T1 and T2.Hope decreased by T2, yet general anxiety and CGP-specific anxiety also decreased. Receiving actionable results did not impact psychological outcomes at T2. At T2, lower hope, and higher anxiety, depression and CGP-specific anxiety were associated with lower self-efficacy. Psychological and demo-graphic factors (age, socioeconomic status, language, medical occupation, urban living, family history of cancer) independently predicted one or more psychological trajectories. Worse health status and perceived susceptibility to cancer progression predicted hope and anxiety trajectories. Conclusion: Further research on interventions to best support patients undergoing CGP with high anxiety, hopelessness, fear of cancer progression, and poorer health is urgently needed

Advanced cancer patient preferences for receiving molecular profiling results

Objective: This study aimed to discern preferences for receiving somatic molecular profiling (MP) results in cancer patients who have given consent to undergo testing. Methods: We conducted a mixed‐methods study to explore patients’ views on which MP results they would like to receive and why. Advanced cancer patients (n=1299) completed questionnaires after giving consent to participate in a parent genomics study and undergoing MP. A subset of patients (n=20) participated in qualitative interviews. Results: Almost all (96%) participants were interested in receiving results which would direct cancer treatment (i.e. were actionable). A smaller majority wanted to access results which were not actionable (64%) or were variants of unknown significance (60%). Most (86%) were interested in finding out about germline findings, though not as a priority. Themes identified in interview data were: 1) Cancer is the focus; 2) Trust in clinicians; and 3) Respect for a right not to know. Conclusions: The majority of advanced cancer patients undergoing MP prioritised results which would lead to treatment options. They trusted their oncologists to help them navigate the results return process. While there was interest in knowing about other results, this was a lesser priority. Nevertheless, given high levels of interest in receiving all results, ethical aspects of not providing uninformative results requires further research, including a consideration of patient rationales for desiring this information and what health professionals can and should do to support patients in the absence of meaningful information being available. This article is protected by copyright. All rights reserved

An exploration of decision aid effectiveness: The impact of promoting affective vs. deliberative processing on a health-related decision

Decision aids (DAs) are non-directive communication tools that help patients make value-consistent health-care decisions. However, most DAs have been developed without an explicit theoretical framework, resulting in a lack of understanding of how DAs achieve outcomes