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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 (χ

Germline genome sequencing (GS) holds great promise for cancer prevention by identifying cancer risk and guiding prevention strategies, however research evidence is mixed regarding patient preferences for receiving GS results. The aim of this study was to discern preferences for return of results by cancer patients who have actually undergone GS. We conducted a mixed methods study with a cohort of cancer probands (n = 335) and their genetic relatives (n = 199) undergoing GS in a research setting. Both groups completed surveys when giving consent. A subset of participants (n = 40) completed semi-structured interviews. A significantly higher percentage of probands thought people would like to be informed about genetic conditions for which there is prevention or treatment that can change cancer risk compared to conditions for which there is no prevention or treatment (93% [311] versus 65% [216]; p p

1541 Background: Somatic tumor mutation profiling (STMP) is entering clinical practice. We aimed to investigate psychological impacts of receiving results. Methods: Eligible participants had: advanced solid cancers of any histological type; accessible tissue for STMP; and enrolled in the Molecular Screening and Therapeutics (MoST) Program. 1074 participants (91%) completed a baseline assessment prior to STMP (T0), of whom 570 (47%) received results and completed a post-result assessment (T1) of impact of genetic results (MICRA), anxiety and depression (HADS), cancer-specific anxiety (IES), and satisfaction with decision to have STMP. Linear regression models controlling for age, gender, parental status, cultural diversity, education and ECOG status explored associations between result received and psychological outcomes. Results: 360 participants received an actionable result and were recommended personalised treatment: 152 via a MoST sub-study (G1) and 208 via their treating oncologist (G2). 210 received a non-actionable result (G3). At T1, G3 were significantly more distressed and less positive about their result (MICRA subscales) and less satisfied with their decision to have STMP than both G1 and G2; G2 was less positive than G1. IES and HADs were not impacted by type of result. Interactions between gender and age, and result were non-significant for all psychological outcomes. Perceived self-efficacy in coping with results (p=0.015) and knowledge (p=0.04) at T0 was significantly correlated with satisfaction with decision at T1; self efficacy (T0) was also correlated with MICRA total (T1) (p=0.006). Conclusions: Pathway to treatment receipt is less important to advanced cancer patients than actionability. Patients’ self-efficacy to cope with results prior to testing can identify patients vulnerable to distress post-receipt of STMP results who should be offered psychological counseling. Ensuring good knowledge of STMP at consent may avoid decisional regret. [Table: see text]

Key Points Question What value do patients with advanced cancer place on tumor variation profiling? Findings In this survey study of 777 patients with advanced cancer, 689 individuals (89%) indicated that they would have tumor molecular profiling for as little as a 1% actionable return rate, but fewer were willing to pay for it. Country of birth, medical- or science-related occupation, attitude toward uncertainty, and perceived importance of tumor molecular profiling were associated with willingness to pay. Meaning Ability to pay may limit access to tumor molecular profiling; ongoing societal debate is required to establish the value of tumor molecular profiling and whether subsidization is necessary to ensure equity of access., Importance Use of tumor molecular profiling (MP) is entering routine clinical practice; however, little is known about how much and why patients value MP. Objective To examine the perceived value of MP to patients with advanced cancer and factors associated with perceived value. Design, Setting, and Participants A cross-sectional survey that included willingness-to-pay trade-off scenarios was administered to participants after consent and before MP. A total of 777 participants (94% response rate) were recruited from the Molecular Screening and Therapeutics Program. Eligible patients had advanced solid cancers of any histologic type, were receiving or had completed their last line of effective therapy, had an Eastern Cooperative Oncology Group Performance Status 0 to 3, and had sufficient accessible tissue for MP. The participants were recruited between October 24, 2017, and March 12, 2019, and data analysis was conducted from March 13 to April 14, 2019. Main Outcomes and Measures Willingness to pay for MP was assessed via hypothetical trade-off scenarios varying in the actionable return rate (1%, 20%, or 40%) and cost (A$0, A$300 [US$210], A$1000 [US $700], A$3000 [US $2100], or A$10 000 [US $7000]). Ordinal regressions were used to explore factors associated with willingness to have and pay for MP. Results Of 777 participants (405 women [52%]; mean [SD] age, 55.47 [14.26] years), 689 patients (89%) would have MP for as little as a 1% actionable return rate. Fifty-six patients (7%) would require at least a 20% return rate and 11 patients (1%) would require at least a 40% return rate. Fifteen patients (2%) consistently chose not to have the test; 6 participants (0.8%) had missing values on this item. Participants were willing to pay a median of A$1000 if the actionable return rate was 1% and A$3000 for an actionable return rate of 20% to 40%. Of 762 individuals who agreed to testing, 482 patients (64%) were consistently unwilling to pay A$10 000, regardless of the actionable return rate. Patients born in Australia or New Zealand were more likely to want MP (eg, participants born in South Asia had an ordered odds for the tipping point of 7.74 [95% CI, 1.67-36.05; P = .009] times higher than Australian- and/or New Zealand–born participants). Patients born in Australia or New Zealand were also more willing to pay A$1000 or A$3000 (eg, participants born in Western Europe had an ordered odds for the tipping point for paying A$1000 of 1.74 [95% CI, 1.01-3.00; P = .048] times higher than Australian- and/or New Zealand–born participants). People with a medical- or science-related occupation and with more negative attitudes toward uncertainty were more likely to pay A$10 000 (eg, A$10 000 tipping point–ordered odds of participants with a medical- or science-related occupation was 0.49 [95% CI, 0.7-0.87; P = .02] times that of participants without a medical- or science-related occupation). Conclusions and Relevance This study found apparent high interest in but lower willingness to pay for MP among patients with advanced cancer. Ability to pay may limit access to MP. Ongoing societal debate is required to establish the value of MP and whether subsidization is needed to ensure equity of access., This survey study examines the acceptance of and willingness to pay for molecular profiling of tumors by patients with advanced cancer.

Ultrastructurally identified inhibitory synapses in layer II of rat sensorimotor cortex decline between middle and old age [Poe, B.H., Linville, C., Brunso-Bechtold, J., 2001. Age-related decline of presumptive inhibitory synapses in the sensorimotor cortex as revealed by the physical disector. J. Comp. Neurol. 439, 65–72]. The current study investigated whether a loss or shrinkage of gamma-aminobutyric acid (GABA)ergic interneurons contribute to that decline. Coronal sections from middle-aged (15–17 months) and old (25–29 months) Fischer 344 X Brown Norway male rats were immunoreacted with antibodies to the GABA synthesizing enzyme glutamic acid decarboxylase (GAD); the calcium-binding protein parvalbumin (PV), or the neuronal marker NeuN. The number of GAD-immunoreactive (IR), PV-IR, and NeuN-IR cells were determined stereologically using the optical disector technique and the cross-sectional areas of GAD-IR cells were measured in layers II/III, IV, V and VI of sensorimotor cortex. Neither the number of GAD-IR or NeuN-IR cells, nor the size of GAD-IR cells, declined significantly between middle and old age. A modest decline in the PV-IR subset of inhibitory interneurons was observed, predominantly due to changes in layers V and VI. Stereological analysis of layer II/III GAD-IR boutons revealed a stability of immunocytochemically identified inhibitory terminals. Taken together, these results indicate a general maintenance of overall GABAergic neurons in sensorimotor cortex between middle and old age and the loss of ultrastructurally identified inhibitory synapses may be due to the decline of a subset of GABAergic terminals.