PurposeTo explore public attitudes towards modifying frequency of mammography screening based on genetic risk.MethodsHome-based interviews were carried out with a population-based sample of 942 women aged 18–74 years in the UK. Demographic characteristics and perceived breast cancer (BC) risk were examined as predictors of support for risk-stratified BC screening and of the acceptability of raised or lowered screening frequency based on genetic risk, using multivariate logistic regression.ResultsOver two-thirds of respondents (65.8%) supported the idea of varying screening frequency on the basis of genetic risk. The majority (85.4%) were willing to have more frequent breast screening if they were found to be at higher risk, but fewer (58.8%) were willing to have less frequent screening if at lower risk (t (956) = 15.6, p < 0.001). Ethnic minority status was associated with less acceptability of more frequent screening (OR = 0.40, 95% CI = 0.21–0.74), but there were no other significant demographic correlates. Higher perceived risk of BC was associated with greater acceptability of more frequent screening (OR = 1.71, 95%CI = 1.27–2.30).ConclusionWomen were positive about adjusting the frequency of mammography screening in line with personal genetic risk, but it will be important to develop effective communication materials to minimise resistance to reducing screening frequency for those at lower genetic risk.
Study Purpose: A population-based risk stratification programme for ovarian cancer (OC) may improve OC survival by identifying women at increased risk and implementing an appropriate risk management strategy. The present study explored attitudes towards an OC risk stratification programme incorporating predictive genetic testing and risk-stratified screening as part of a larger study investigating OC screening. Methods: Focus groups consisting of 56 members of the general public (mean age 45 years; 34% non-white) were conducted using a hypothetical scenario. The group sessions were recorded, transcribed verbatim and analysed using Framework Analysis. Results: There was strong support for the proposed programme. Genetic testing and risk-stratified screening was thought to raise awareness, offer reassurance and offer opportunities for early intervention. Anxiety was only mentioned in relation to receiving a diagnosis of OC and not with screening per se. Perhaps because lay models of cancer already embrace both environmental and genetic factors, a low-risk result was not anticipated to result in a false sense of immunity. Unexpectedly, participants also wanted to receive cancer prevention advice in conjunction with genetic testing; screening alone was not regarded as sufficient. Conclusion: The encouraging results from this small study warrant further large-scale research into risk-stratified OC screening.
BackgroundAdvances 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.MethodsWe 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.ResultsFull 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.ConclusionsThese findings give confidence in taking forward research on integration of novel genomic technologies into mainstream healthcare.
ObjectiveTo test the hypothesis that adding obesity gene feedback (FTO) to simple weight control advice at a life stage with raised risk of weight gain (university) increases readiness to control weight.MethodsIndividually randomized controlled trial comparing the effect of: (i) simple weight control advice plus FTO feedback (FA) and (ii) simple weight control advice only (AO) on readiness to engage with weight control. Differences in stage of change by genotype and differential weight control behaviors were secondary outcomes.ResultsOf 1,016 participants randomized, only 279 completed follow-up, yielding 90% power to detect a small effect for readiness to control weight. As predicted, FA participants were more likely to be in the contemplation stage than AO participants (P = 0.023). Participants receiving higher-risk genetic results were at a higher stage of change than controls (P = 0.003), with a trend toward a higher stage of change than those getting lower-risk results (P = 0.051). Lower-risk results did not decrease weight control intentions compared with controls (P = 0.55). There were no group differences in adherence to recommended weight control behaviors (P = 0.87).ConclusionsAdding FTO feedback to weight control advice enhanced readiness to control weight, without evidence for genetic determinism, but had no more effect on behavior than weight control advice alone.
There is an opportunity to improve outcomes for ovarian cancer (OC) through advances in risk stratification, early detection and diagnosis. A population-based OC genetic risk prediction and stratification program is being developed. A previous focus group study with individuals from the general population showed support for the proposed program. This qualitative interview study explores the attitudes of women at high risk of OC. Eight women participated in one-on-one, in-depth, semi-structured interviews to explore: experiences of learning of OC risk, risk perceptions, OC knowledge and awareness, and opinions on risk stratification approach. There was evidence of strong support for the proposed program. Benefits were seen as providing reassurance to women at low risk, and reducing worry in women at high risk through appropriate clinical management. Stratification into ‘low’ and ‘high’ risk groups was well-received. Participants were more hesitant about stratification to the ‘intermediate’ risk group. The data suggest formats to effectively communicate OC risk estimates will require careful thought. Interactions with GPs were highlighted as a barrier to OC risk assessment and diagnosis. These results are encouraging for the possible introduction and uptake of a risk prediction and stratification program for OC in the general population.
Social appearance anxiety is an unexplored concept in eating disorders (ED). It refers to social anxiety surrounding overall appearance, including body shape, and fear of negative evaluation by others. It is potentially relevant to those with bulimia nervosa (BN) as both social anxiety and body image disturbance are commonly experienced by patients. Thirty women with BN and forty healthy controls (HC) completed the Social Appearance Anxiety Scale (SAAS), a 16-item self-report questionnaire. ED cognitions and behaviours were assessed with the Eating Disorders Examination-Questionnaire. Women with BN have significantly higher SAAS scores than HC (z=-6.79, p<0.001). In BN, SAAS scores show significant positive correlation with global ED subscales and dietary restraint. In HC, SAAS scores are correlated with shape, weight, eating concern, and global eating disturbance subscales. Preliminary findings suggest the SAAS is potentially useful in future research concerning overall risk factors for eating disturbance and treatment outcome in BN.
Aims: The use of tamoxifen and raloxifene as preventive therapy for women at increased risk of breast cancer was approved by the National Institute for Health and Care Excellence (NICE) in 2013. We undertook a qualitative investigation to investigate the factors affecting the implementation of preventive therapy within the UK. Methods: We recruited general practitioners (GPs) (n = 10) and clinicians working in family history or clinical genetics settings (FHCG clinicians) (n = 15) to participate in semi-structured interviews. Data were coded thematically within the Consolidated Framework for Implementation Research. Results: FHCG clinicians focussed on the perceived lack of benefit of preventive therapy and difficulties interpreting the NICE guidelines. FHCG clinicians felt poorly informed about preventive therapy, and this discouraged patient discussions on the topic. GPs were unfamiliar with the concept of preventive therapy, and were not aware that they may be asked to prescribe it for high-risk women. GPs were reluctant to initiate therapy because it is not licensed, but were willing to continue a prescription if it had been started in secondary or tertiary care. Conclusions: Barriers to implementing preventive therapy within routine clinical practice are common and could be addressed by engaging all stakeholders during the development of policy documents.
Genetic testing for obesity risk is increasingly available to the public but few studies have examined motivational or affective reactions. Here we report findings from a “vignette” study investigating reactions to “higher‐risk” and “average‐risk” results for the obesity‐related FTO gene in two groups: a panel sample of individuals with weight concerns, for whom testing may have treatment implications (n = 306, mean age = 45 years, mean BMI = 35) and a student sample (n = 395, mean age = 25 years, mean BMI = 23), for whom testing would have implications for obesity prevention. Participants were given FTO gene information that described higher‐risk alleles as linked with modest weight gain and slightly higher risk of obesity. They responded to both higher‐ and average‐risk vignettes, with order randomized. Interest in genetic testing was high overall, and higher in panel respondents than students (93% vs. 78% would “probably” or “definitely” have the test; P < 0.001). In students, a higher‐risk result generated higher motivation to change (d = 0.15; P < 0.001), but also slightly higher negative affect (d = 0.03, P < 0.001) and fatalism (d = 0.05, P < 0.001) than an average‐risk result. Panel respondents also had higher motivation to change (d = 0.17, P < 0.001) as well as relief about having an explanation for their body weight (d = 0.02, P = 0.013) in the higher‐risk condition, but no increase in fatalism or depression. These results suggest that at the level of anticipated responses to FTO gene feedback, higher‐risk results had positive motivational effects with minimal changes in negative affect or fatalism. Genetic testing has the potential to be a useful clinical or preventive tool when combined with appropriate information.
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