Genetic testing and personalized ovarian cancer screening: a survey of public attitudes

Background Advances in genetic technologies are expected to make population-wide genetic testing feasible. This could provide a basis for risk stratified cancer screening; but acceptability in the target populations has not been explored. Methods We assessed attitudes to risk-stratified ovarian cancer (OC) screening based on prior genetic risk assessment using a survey design. Home-based interviews were carried out by the UK Office of National Statistics in a population-based sample of 1095 women aged 18–74. Demographic and personal correlates of attitudes to risk-stratified OC screening based on prior genetic risk assessment were determined using univariate analyses and adjusted logistic regression models. Results Full data on the key analytic questions were available for 829 respondents (mean age 46 years; 27 % ‘university educated’; 93 % ‘White’). Relatively few respondents felt they were at ‘higher’ or ‘much higher’ risk of OC than other women of their age group (7.4 %, n = 61). Most women (85 %) said they would ‘probably’ or ‘definitely’ take up OC genetic testing; which increased to 88 % if the test also informed about breast cancer risk. Almost all women (92 %) thought they would ‘probably’ or ‘definitely’ participate in risk-stratified OC screening. In multivariate logistic regression models, university level education was associated with lower anticipated uptake of genetic testing (p = 0.009), but with more positive attitudes toward risk-stratified screening (p <0.001). Perceived risk was not significantly associated with any of the outcome variables. Conclusions These findings give confidence in taking forward research on integration of novel genomic technologies into mainstream healthcare

Impact of a decision aid about stratified ovarian cancer risk-management on women's knowledge and intentions: a randomised online experimental survey study.

BACKGROUND: Risk stratification using genetic and other types of personal information could improve current best available approaches to ovarian cancer risk reduction, improving identification of women at increased risk of ovarian cancer and reducing unnecessary interventions for women at lower risk. Amounts of information given to women may influence key informed decision-related outcomes, e.g. knowledge. The primary aim of this study was to compare informed decision-related outcomes between women given one of two versions (gist vs. extended) of a decision aid about stratified ovarian cancer risk-management. METHODS: This was an experimental survey study comparing the effects of brief (gist) information with lengthier, more detailed (extended) information on cognitions relevant to informed decision-making about participating in risk-stratified ovarian cancer screening. Women with no personal history of ovarian cancer were recruited through an online survey company and randomised to view the gist (n = 512) or extended (n = 519) version of a website-based decision aid and completed an online survey. Primary outcomes were knowledge and intentions. Secondary outcomes included attitudes (values) and decisional conflict. RESULTS: There were no significant differences between the gist and extended conditions in knowledge about ovarian cancer (time*group interaction: F = 0.20, p = 0.66) or intention to participate in ovarian cancer screening based on genetic risk assessment (t(1029) = 0.43, p = 0.67). There were also no between-groups differences in secondary outcomes. In the sample overall (n = 1031), knowledge about ovarian cancer increased from before to after exposure to the decision aid (from 5.71 to 6.77 out of a possible 10: t = 19.04, p < 0.001), and 74% of participants said that they would participate in ovarian cancer screening based on genetic risk assessment. CONCLUSIONS: No differences in knowledge or intentions were found between women who viewed the gist version and women who viewed the extended version of a decision aid about risk-stratified ovarian cancer screening. Knowledge increased for women in both decision aid groups. Further research is needed to determine the ideal volume and type of content for decision aids about stratified ovarian cancer risk-management. TRIAL REGISTRATIONS: This study was registered with the ISRCTN registry; registration number: ISRCTN48627877 .This work was funded by Cancer Research UK (Grant Code: C1005/A12677) and The Eve Appeal Gynaecological Cancer Charity

Biopsychosocial predictors of perceived life expectancy in a national sample of older men and women.

Perceived life expectancy (PLE) is predictive of mortality risk in older adults, but the factors that may contribute to mental conceptions of PLE are unknown. We aimed to describe the sociodemographic, biomedical, behavioral, and psychological predictors of self-reported PLE estimates among older English adults. Data were from 6662 adults aged 50-79 years in the population-based English Longitudinal Study of Ageing (cross-sectional sample from 2012/13). PLE was assessed in the face-to-face study interview ("What are the chances you will live to be age x or more?" where x = current age plus 10-15 years). Responses were categorized as 'low' (0-49%), 'medium' (50-74%), and 'high' (75-100%). Adjusted prevalence ratios (PRs) and 95% confidence intervals (CIs) for low vs. high PLE were estimated using population-weighted modified Poisson regression with robust error variance. Overall, 1208/6662 (18%) participants reported a low PLE, 2806/6662 (42%) reported a medium PLE, and 2648/6662 (40%) reported a high PLE. The predictors of reporting a low PLE included older age (PR = 1.64; 95% CI: 1.50-1.76 per 10 years), male sex (PR = 1.14; 95% CI: 1.02-1.26), being a smoker (PR = 1.39; 95% CI: 1.22-1.59 vs. never/former smoker), and having a diagnosis of cancer or diabetes. A low sense of control over life was associated with low PLE, as was low satisfaction with life and worse self-rated health. Those with a higher perceived social standing were less likely to report a low PLE (PR = 0.90; 95% CI: 0.87-0.93 per 10-point increase, out of 100). This study provides novel insight into potential influences on older adults' expectations of their longevity, including aspects of psychological well-being. These results should be corroborated to better determine their implications for health-related decision-making, planning, and behavior among older adults

Illness Risk Representation beliefs underlying adolescents' cardiovascular disease risk appraisals and the preventative role of physical activity

© 2019 The British Psychological Society. This is the peer reviewed version of the following article: Newby, K., Varnes, L., Yorke, E., Meisel, S. F., & Fisher, A. (2019). Illness Risk Representation beliefs underlying adolescents' cardiovascular disease risk appraisals and the preventative role of physical activity. British Journal of Health Psychology. https://doi.org/10.1111/bjhp.12400. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Use of Self-Archived Versions.OBJECTIVES: The primary aim was to explore adolescents' cardiovascular disease risk appraisals and establish whether they understood the preventative role of physical activity (PA). The secondary aim was to examine whether adolescents' cardiovascular disease risk appraisal fitted with the Illness Risk Representations (IRR) framework. DESIGN: Qualitative. METHODS: Thirty-one adolescents aged between 13 and 15 years participated in semi-structured interviews. Data were analysed using Framework Analysis. RESULTS: Knowledge of lifestyle behaviours contributing to cardiovascular disease was good. Participants reflected on their current (or expected future) patterns of these behaviours when making judgements about lifetime risk. They struggled however to explain how different health behaviours, including PA, affected the development of the disease. Cardiovascular disease was viewed as potentially fatal, but participants had only a superficial understanding of the consequences of, or treatments for, the disease. The IRR framework, as proposed by Cameron (2003, https://cancercontrol.cancer.gov/brp/research/theories_project/cameron.pdf), largely captured the way in which adolescents' made judgements about their risk of cardiovascular disease. CONCLUSIONS: The findings suggest that adolescents are underestimating their risk of cardiovascular disease due to unhelpful beliefs. Interventions should: provide clear and simple explanations of how different health behaviours contribute to cardiovascular risk, highlight discrepancies that exist between current levels of preventative behaviour and that required to confer a protective effect, expose the false belief that a lack of PA in early life can be compensated for in later adulthood, and aid understanding of the true impact that the disease and its treatment could have of health and quality of life outcomes. Statement of contribution What is already known on this subject? Physical activity (PA) throughout one's lifetime can reduce the risk of developing cardiovascular disease. The majority of adolescents' do not meet the recommended levels of PA. Changing beliefs about the risk of cardiovascular disease might be a useful strategy to motivate engagement in PA. What does this study add? An increased understanding of adolescents' knowledge of cardiovascular disease and the link with PA. Identification of strategies to change adolescents' risk perceptions of cardiovascular disease in ways that could motivate PA. Evidence to support the Illness Risk Representation framework.Peer reviewedFinal Accepted Versio

Ethnic minority women prefer strong recommendations to be screened for cancer

Abstract Background Cancer screening invitations can explicitly recommend attendance or encourage individuals to consider the risks and benefits before deciding for themselves. Public preferences for these approaches might vary. We explored ethnic minority women’s preferences for a strong recommendation to be screened. Methods Women aged 30–60 years from Indian, Pakistani, Bangladeshi, Caribbean, African and white British backgrounds (n = 120 per group) completed face-to-face interviews with a multi-lingual interviewer. The interview included a question on which approach to screening invitations they would prefer: i) A strong recommendation from the National Health Service (NHS) to go for screening, ii) A statement that the NHS thinks you should go for screening, but it’s up to you to decide, iii) No recommendation. Analyses examined predictors of preference for a strong recommendation. Results Preferences varied by ethnicity (χ 2(5) = 98.20, p <.001). All ethnic minority groups had a preference for a strong recommendation to be screened (53–86% across ethnic groups vs 31% white British). Socio-demographic factors (marital status, education and employment), and indicators of acculturation (main language and migration status), contributed to explaining recommendation preferences (χ 2(5) = 35.95 and χ 2(3) = 11.59, respectively, both p <.001), but did not mediate the ethnicity effect entirely. Self-rated comprehension of written health information did not contribute to the model. Conclusions A strong recommendation to participate in cancer screening appears to be important for ethnic minority women, particularly non-English speakers. Future research could explore how to best arrive at a consensus that respects patient autonomy while also accommodating those that would prefer to be guided by a trusted source

Common methods of measuring ‘informed choice’ in screening participation: Challenges and future directions

There is general agreement among public health practitioners, academics, and policymakers that people offered health screening tests should be able to make informed choices about whether to accept. Robust measures are necessary in order to gauge the extent to which informed choice is achieved in practice and whether efforts to improve it have succeeded. This review aims to add to the literature on how to improve methods of measuring informed choice. We discuss and critique commonly-used approaches and outline possible alternative methods that might address the issues identified. We explore the challenges of defining what information should be provided about screening and hence understood by service users, appraise the use of ‘thresholds’ to define e.g. positive attitudes towards screening, and describe problems inherent in conceptualising ‘informed choice’ as a single dichotomous outcome that either does or does not occur. Suggestions for future research include providing greater detail on why particular aspects of screening information were considered important, analysing knowledge and attitude measures at an ordinal or continuous level (avoiding problematic decisions about dichotomising data in order to set thresholds), and reconceptualising informed choice as a multifactorial set of outcomes, rather than a unitary one. Keywords: Decision making, Research methodology, Mass screenin

Interpersonal processes in Paranoia:A systematic review

AbstractParanoid ideation is a core feature of psychosis, and models of paranoia have long proposed that it arises in the context of disturbances in the perception of the self. However, to develop targeted interventions, there is a benefit in clarifying further, which aspects of self-perception are implicated. Interpersonal sensitivity is a personality trait which has been associated with the risk of paranoid thinking in the general population. However, not all studies have found this link. We aimed to review the empirical literature assessing the association between interpersonal sensitivity and paranoia in both general population and clinical samples; and to explore if associations found differed depending on whether state or trait paranoia was assessed. The review followed PRISMA guidelines. Articles were identified through a literature search in OVID (PsychINFO, MEDLINE) and Web of Science up to December 2016. Fourteen studies with a total of 12 138 participants were included. All studies were of ‘fair’ or ‘good’ quality. A robust association was found between interpersonal sensitivity and paranoia in clinical and general population samples alike, regardless of the method of assessment of both paranoia and interpersonal sensitivity. Although this finding was more pronounced in studies of trait paranoia, it is likely that differences in study purpose, measurement, and power explain these differences. Findings from this review support the hypothesis that feelings of personal vulnerability and exaggerated socially evaluative concerns are central for both onset and maintenance of paranoid symptoms, suggesting avenues for future research in targeted interventions.</jats:p