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It is important to understand how individuals perceive uncertainties and the consequent impact on their psychological well‐being and health behavior. The Perceptions of Uncertainties in Genome Sequencing (PUGS) scale measures clinical, affective, and evaluative uncertainties about information from sequencing. The PUGS scale has been shown to be valid and reliable among individuals receiving results about their genomes. This study assessed whether its validity generalized to patients with cancer undergoing tumor sequencing. Exploratory factor analysis (EFA) was conducted on data from the Molecular Screening and Therapeutics Program (n = 310) to identify a measurement model. Confirmatory factor analysis (CFA) was used to determine the adequacy of the resulting fit. EFA identified the same three‐factor structure reported previously. CFA confirmed that the measurement model yielded a good fit (χ2/df = 3.72, CFI = 0.96, SRMR = 0.05, and RMSEA = 0.09) and satisfied convergent and discriminant validity. These findings provide further evidence of the validity and reliability of the PUGS scale in measuring three types of uncertainty. Continued application will facilitate an evidence‐based approach to intervention and enhance understanding of what it is like to receive results. In turn, this will improve clinical outcomes as undergoing sequencing becomes an increasingly common experience. [ABSTRACT FROM AUTHOR]

This study assessed the psychological predictors of preferences for return of comprehensive tumor genomic profiling (CTGP) results in patients with advanced cancers, enrolled in the Molecular Screening and Therapeutics Program. Patients completed a questionnaire prior to undergoing CTGP. Of the 1434 who completed a questionnaire, 96% would like to receive results that can guide treatment for their cancer, and preference for receiving this type of result was associated with lower tolerance of uncertainty. Sixty‐four percent would like to receive results that cannot guide treatment, and lower tolerance of uncertainty, self‐efficacy, and perceived importance were associated with this preference. Fifty‐nine percent would like to receive variants of unknown significance, which was associated with lower tolerance of uncertainty, higher self‐efficacy, and perceived importance. Eighty‐six percent wanted to receive germline results that could inform family risk. This was associated with higher self‐efficacy, perceived importance, and perceived susceptibility. Although most patients wanted to receive all types of results, given the differing patient preferences regarding the return of results depending on the utility of the different types of results, it appears critical to safeguard patient understanding of result utility to achieve informed patient choices. This should be accompanied by appropriate consent processes. [ABSTRACT FROM AUTHOR]

Genomic Sequencing (GS) to identify high cancer risk will soon enter clinical practice at significant cost to the health system. This study aimed to quantify perceived value of GS to Australian cancer patients and their first‐degree relatives participating in a genomic sequencing study, and factors associated with value. Participants were recruited upon consent to the genomics study. Eligible participants (with cancer of likely genetic etiology, or a first‐degree relative) completed a questionnaire prior to GS. Willingness to pay was assessed via hypothetical trade‐off scenarios of actionable result return rates of 1%, 10%, 20%, 30%, 40% or 50%. Of 348 probands and 213 relatives (92% and 93% response rate), 81% would consistently have GS for as little as a 1% actionable return rate. Participants would pay a median of $1,000 for return rates of at least 20% (probands) or 30% (relatives), and $300 for lower return rates. Probands with common cancers and negative attitudes to uncertainty were more likely to have GS; those with higher education were more willing to pay $1,000 and $3,000 for lower return rates. This study found high interest in, but lower willingness to pay for GS in cancer patients and their first‐degree relatives, possibly due to inability to pay. Further research is needed to improve our understanding of how individuals in different risk circumstances, trade‐off the risks, harms, and benefits of GS. [ABSTRACT FROM AUTHOR]

Introduction: Fear of cancer progression (FCP) impacts quality of life and is a prevalent unmet need in patients diagnosed with advanced cancer, particularly as treatment options are reduced. We aimed to identify longitudinal patterns in FCP over 6 months in patients with advanced cancer receiving comprehensive tumour genomic profiling (CTGP) results, and their correlates. Methods: Patients with pathologically confirmed metastatic disease (∼70% rare cancers) receiving or post their last line of standard therapy completed questionnaires at T0 (prior to CTGP), T1 (immediately post CTGP results) and T2 (2 months later). Results: High stable (N = 52; 7.3%) and low/moderate stable (N = 56; 7.8%) FCP patterns over time typified the largest participant groups (N = 721). Those with an immediately actionable variant versus a non‐actionable variant (p = 0.045), with higher FCP (p < 0.001), and lower Functional Assessment of Chronic Illness Therapy—Spiritual Well‐being (FACIT‐Sp) scores (p = 0.006) at T0, had higher FCP at T1. Those with higher FCP at T0 (p < 0.001) and at T1 (p < 0.001), lower FACIT‐Sp scores at T1 (p = 0.001), lower education (p = 0.031) and female gender (p = 0.027) had higher FCP at T2. Discussion: Routine screening for psychological/spiritual characteristics in those about to undergo CTGP may help to identify patients who may benefit from closer monitoring and provision of psychosocial support. Future studies should explore interventions to best address FCP in this vulnerable group, as interventions assessed to date have almost all addressed patients with curative cancers or newly diagnosed advanced disease. [ABSTRACT FROM AUTHOR]

Implementation of any new medical test, including germline genome sequencing (GS) to inform cancer risk, should take place only when a test is effective, ethically justifiable and acceptable to a population. Little empirical evidence exists on patient views regarding GS for cancer risk. The aim of this study was to elicit opinions on who should be offered GS and who should pay for it. Participants with a probable genetic basis for their cancer (n = 335) and blood relatives (n = 199) were recruited to undergo GS and invited to complete questionnaires at baseline. A subset (n = 40) also participated in qualitative interviews about their views regarding access to GS to detect cancer risk. Our response rate was 92% for questionnaires and 100% for interviews. Participants expressed high enthusiasm overall for access to GS for those with a family history of cancer and anyone who requested testing, but enthusiasm was lower for universal access, if opting out was possible and finances not an issue. Rationales for these views reflected maximising the sound use of resources. Challenges to introducing community screening via GS to limit cancer burden were raised, including the current limits of science and individual ability to cope with uncertain results. Participants undergoing GS supported cancer risk testing for those with a family history of cancer but were concerned about the challenges of designing and implementing a population‐based GS cancer‐screening program. [ABSTRACT FROM AUTHOR]