Accurate Risk Perceptions Research Articles

Flood risk perceptions and the UK media: Moving beyond “once in a lifetime” to “Be Prepared” reporting

In the winter 2015/2016 a series of storms resulted in widespread flooding in northern England, damaging hundreds of properties, disrupting transport and causing public disdain. The flooding was widely covered in the media. This article develops a methodological framework to conceptualise factors influencing risk perception related to flood events, discusses the media’s role as amplifier or attenuator of risks, and demonstrates how understanding risk perception can influence the deployment of effective policies to modify and reinforce more accurate risk perception to increase individual and community resilience and create a two-way dialogue between those risk and authorities. Given that climate change induced increased flood risk is a reality and the evidence that this is not yet understood by the public, nor addressed by the media, we suggest an urgent shift from the status quo media coverage based on blame to one of “Be Prepared”. Furthermore, we suggest risk communication be based on better understanding of how at-risk communities perceive risk.

Population-Based Study of Attitudes toward BRCA Genetic Testing among Orthodox Jewish Women.

Given the high prevalence (1 in 40) of BRCA1 and BRCA2 mutations among Ashkenazi Jews, population-based BRCA genetic testing in this ethnic subgroup may detect more mutation carriers. We conducted a cross-sectional survey among Orthodox Jewish women in New York City to assess breast cancer risk, genetic testing knowledge, self-efficacy, perceived breast cancer risk and worry, religious and cultural factors affecting medical decision-making. We used descriptive statistics and multivariable logistic regression models to identify predictors of genetic testing intention/uptake. Among evaluable respondents (n = 243, 53% response rate), median age was 25 and nearly half (43%) had a family history of breast cancer. Only 49% of the women had adequate genetic testing knowledge and 46% had accurate breast cancer risk perceptions. Five percent had already undergone BRCA genetic testing, 20% stated that they probably/definitely will get tested, 28% stated that they probably/definitely will not get tested, and 46% had not thought about it. High decision self-efficacy, adequate genetic testing knowledge, higher breast cancer risk, and overestimation of risk were associated with genetic testing intention/uptake. Decision support tools that improve knowledge and self-efficacy about genetic testing may facilitate population-based BRCA testing among Orthodox Jews.

Health literacy and the perception of risk in a breast cancer family history clinic

BackgroundInformed consent is an essential component of medical practice, and especially so in procedural based specialties which entail varying degrees of risk. Breast cancer is one of the most common cancers in women, and as such is the focus of extensive research and significant media attention. Despite this, considerable misperception exists regarding the risk of developing breast cancer. AimsThis study aims to examine the accuracy of risk perception of women attending a breast cancer family history clinic, and to explore the relationship between risk perception accuracy and health literacy. MethodsA cross-sectional study of women attending a breast cancer family history clinic (n = 86) was carried out, consisting of a patient survey and a validated health literacy assessment. Patients’ perception of personal and population breast cancer risk was compared to actual risk as calculated by a validated risk assessment tool. ResultsSignificant discordance between real and perceived risks was observed. The majority (83.7%) of women overestimated their personal lifetime risk of developing breast cancer, as well as that of other women of the same age (89.5%). Health literacy was considered potentially inadequate in 37.2% of patients; there was a correlation between low health literacy and increased risk perception inaccuracy across both personal ten-year (rs = 0.224, p = 0.039) and general ten-year population estimations. (rs = 0.267, p = 0.013). ConclusionInaccuracy in risk perception is highly prevalent in women attending a breast cancer family history clinic. Health literacy inadequacy is significantly associated with this inaccuracy.

Association between intersection characteristics and perceived crash risk among school-aged children

This research examined how environmental attributes near intersections influence the perceived crash risk among school-aged children, which provides information on the potential risks of pedestrian crashes that can guide the development of proactive countermeasures. In a sample of 799 children aged 10–12 years old in Korea, the environmental attributes of intersections perceived as having a high risk of producing crashes near elementary schools were investigated using standard negative binomial and zero-inflated negative binomial models.The results showed that a higher number of student crossings, a wider road width, the presence of crosswalks, student-friendly facilities at the intersection, and four-way intersections were significant and positively associated with perceived crash risk among school-aged children. The findings related to building characteristics indicated that a higher number of entrances at an intersection increased the perceived crash risk while higher visibility at the intersection reduced the perception of risk. Associations with traffic-calming measures were weak,suggesting that the measures used in the study areas were not effective in reducing the perceived crash risk. The results of a police-reported crash model showed that school-aged children have a relatively accurate perception of crash risk and that the perceived crash risk of school-aged children may provide valuable information on the intersection characteristics in need of attention near school sites.

Role of Safety Training: Impact on Hazard Recognition and Safety Risk Perception

Hazard recognition and the accurate perception of safety risk are fundamental to the success of any safety program. When hazards remain unrecognized, or the associated safety risk is underestimated, the likelihood of catastrophic and unexpected injuries dramatically increase. Unfortunately, recent research has found that a large number of hazards in construction remain unrecognized. Likewise, past studies have demonstrated that safety risk is widely underestimated within construction. To improve hazard recognition and the accurate perception of safety risk, employers adopt a wide variety of training programs. However, the prevalent use of ineffective and unengaging training methods have significantly impeded training efforts in construction. The purpose of this research was to assess the impact of safety training on two objective training outcomes: hazard recognition performance and safety risk perception. The research objectives were accomplished by gathering empirical data from 51 active projects in the United States. Specifically, data pertaining to the training method (i.e., high-engagement versus low-engagement training) adopted at the project level were gathered, following which the hazard recognition ability of representative workers and their safety risk perception levels were measured. The results of the study revealed that (1) compared to low-engagement training, high-engagement training is associated with higher levels of hazard recognition and safety risk perception; and (2) the effect of training on safety risk perception is mediated by hazard recognition performance. Therefore, workers representing projects that offered high-engagement training were able to identify a larger proportion of hazards, and consequently perceived that safety risk was relatively higher. The findings of this study will be useful to practicing professionals seeking to improve training delivery, hazard recognition performance, and the perception of safety risk within construction. This study represents the first formal attempt to empirically evaluate the holistic relationship between training, hazard recognition, and safety risk perception in the construction context.

Consumers' Risk Perception of Household Cleaning and Washing Products.

A large share of accidental and nonaccidental poisonings are caused by household cleaning and washing products, such as drain cleaner or laundry detergent. The main goal of this article was to investigate consumers' risk perception and misconceptions of a variety of cleaning and washing products in order to inform future risk communication efforts. For this, a sorting task including 33 commonly available household cleaning and washing products was implemented. A total of 60 female consumers were asked to place the cleaning and washing products on a reference line 3 m in length with the poles "dangerous" and "not dangerous." The gathered data were analyzed qualitatively and by means of multidimensional scaling, cluster analysis, and linear regression. The dimensionality of the sorting data suggests that both analytically (i.e., written and graphical hazard notes and perceived effectiveness) and intuitively driven risk judgments (i.e., eco vs. regular products) were applied by the participants. Furthermore, results suggest the presence of misconceptions, particularly related to consumers' perceptions of eco cleaning products, which were generally regarded as safer than their regular counterparts. Future risk communication should aim at dispelling these misconceptions and promoting accurate risk perceptions of particular household cleaning and washing products.

Decision aids to help older people make health decisions: a systematic review and meta-analysis.

BackgroundDecision aids have been overall successful in improving the quality of health decision making. However, it is unclear whether the impact of the results of using decision aids also apply to older people (aged 65+). We sought to systematically review randomized controlled trials (RCTs) and clinical controlled trials (CCTs) evaluating the efficacy of decision aids as compared to usual care or alternative intervention(s) for older adults facing treatment, screening or care decisions.MethodsA systematic search of (1) a Cochrane review of decision aids and (2) MEDLINE, Embase, PsycINFO, Cochrane library central registry of studies and Cinahl. We included published RCTs/CCTs of interventions designed to improve shared decision making (SDM) by older adults (aged 65+) and RCTs/CCTs that analysed the effect of the intervention in a subgroup with a mean age of 65+. Based on the International Patient Decision aid Standards (IPDAS), the primary outcomes were attributes of the decision and the decision process. Other behavioral, health, and health system effects were considered as secondary outcomes. If data could be pooled, a meta-analysis was conducted. Data for which meta-analysis was not possible were synthesized qualitatively.ResultsThe search strategy yielded 11,034 references. After abstract and full text screening, 22 papers were included. Decision aids performed better than control resp. usual care interventions by increasing knowledge and accurate risk perception in older people (decision attributes). With regard to decision process attributes, decision aids resulted in lower decisional conflict and more patient participation.ConclusionsThis review shows promising results on the effectiveness of decision aids for older adults. Decision aids improve older adults’ knowledge, increase their risk perception, decrease decisional conflict and seem to enhance participation in SDM. It must however be noted that the body of literature on the effectiveness of decision aids for older adults is still in its infancy. Only one decision aid was specifically developed for older adults, and the mean age in most studies was between 65 and 70, indicating that the oldest-old were not included. Future research should expand on the design, application and evaluation of decision aids for older, more vulnerable adults.Electronic supplementary materialThe online version of this article (doi:10.1186/s12911-016-0281-8) contains supplementary material, which is available to authorized users.

Parental Estimation of Their Child's Increased Type 1 Diabetes Risk During the First 2 Years of Participation in an International Observational Study: Results From the TEDDY study.

This study assessed mothers' and fathers' perception of their child's risk of getting type 1 diabetes (T1D) during the first 2 years of their participation in The Environmental Determinants of Diabetes in the Young (TEDDY) study. TEDDY parents were informed of their child's increased genetic risk for T1D at study inception. Parent perception of the child's risk was assessed at 3, 6, 15, and 27 months of age. In families with no history of T1D, underestimation of the child's T1D risk was common in mothers (>38%) and more so in fathers (>50%). The analyses indicated that parental education, country of residence, family history of T1D, household crowding, ethnic minority status, and beliefs that the child's T1D risk can be reduced were factors associated with parental risk perception accuracy. Even when given extensive information about their child's T1D risk, parents often fail to accurately grasp the information provided. This is particularly true for fathers, families from low socioeconomic backgrounds, and those with no family history of T1D. It is important to develop improved tools for risk communication tailored to individual family needs.

Inaccurate risk perceptions contribute to treatment gaps in secondary prevention of cardiovascular disease.

All patients with cardiovascular disease (CVD) are at high risk of recurrent events. Despite strong evidence, large treatment gaps exist in CVD secondary prevention. We hypothesise that patients' self-perception and general practitioner's (GP) assessment of future cardiovascular (CV) risk may influence secondary prevention behaviours. To examine in patients with known CVD the perceived risk of future CV events and its relationship with use of secondary prevention medications and risk factor control. We examined patient and practitioner's perceived risk and its relationship with the uptake of secondary prevention recommendations in adults with CVD participating in the Australian Hypertension and Absolute Risk Study. Among the 1453 participants, only 11% reported having a high absolute risk and 29% reported high relative risk of recurrent events. The GP categorised only 30% as having a 5-year risk ≥15%. After adjusting for covariates, hospitalisation within the preceding 12 months was the only significant predictor of patients' accurate risk perception. Conventional CV risk factors were predictive of the GP's risk estimates. Patients who accurately understood their risk reported higher smoking cessation rates (7 vs 3%, P = 0.003) and greater use of antiplatelet, blood pressure lowering therapy and statins (P ≤ 0.01). However, there was no relationship between GP's risk perception and secondary prevention treatments. Both patients and GP have optimistic bias and underestimate the risk of future CV events. Patients' accurate self-perception, but not GP risk perception, was associated with improved secondary preventative behaviours. This suggests that helping patients to understand their risk may influence their motivation towards secondary prevention. Providing support to GP or programmes to help patients better understand their risks could have potential benefit on secondary prevention behaviours.

The impact of communicating cardiovascular risk in type 2 diabetics on patient risk perception, diabetes self-care, glycosylated hemoglobin, and cardiovascular risk

This study aims to investigate the effect of a cardiovascular risk (CVR) communication intervention on the accuracy of CVR perception, diabetes self-care (DSC), glycosylated hemoglobin percent (HbA1c%), and CVR in patients with type 2 diabetes mellitus (T2DM). A randomized controlled trial was performed in T2DM patients attending the family medicine outpatient clinic in Suez Canal University Hospital, Ismailia. The intervention group (n = 107) received a comprehensive CVR communication. Control subjects (n = 107) received the standard usual care. The outcome measures were: accuracy of risk perception, DSC, HbA1c%, and CVR scores. Patients were investigated at baseline and 3 months after the intervention. Differences between arms were assessed using chi-square and Student's t-test, and within-group differences were assessed using the paired t-test and McNemar’s test. After the intervention, the accuracy rate of risk perception was significantly improved (from 44.9 % to 89.7 %) in the intervention group with excellent improvement in agreement between perceived and objective risk (kappa ± SE 83.7 ± 4.4 %, p < 0.000). Diabetes self-care sum scale scores and HbA1c% showed statistically significant improvements for within-intervention group comparisons and between groups after the intervention (p < 0.000). Cardiovascular risk scores showed minimal, not statistically significant improvement in both groups. Our intervention significantly improved CVR perception, DSC, and HbA1c% in patients with T2DM. Further research is needed to investigate the effectiveness of applying more complex and longer lifestyle interventions and to confirm the credibility and sustainability of improvement.

Abstract B54: Concordance between objective and perceived breast cancer risk and breast cancer worry in racially diverse and immigrant women

Abstract Appropriate risk-based screening and risk-reducing interventions are important breast cancer (BC) prevention strategies. However, evidence suggests that many women inaccurately perceive their risk of BC, and that inaccurate perceptions of BC may be associated with inappropriately high or low levels of breast cancer worry, an important factor for health preventive behavior and psychological well-being. We used concordance between objective and perceived BC risk to measure accuracy of risk perception and examined whether accurate perceived risk was associated with BC worry in a predominantly racial minority (66% Hispanic, 16% black), and immigrant (63% foreign-born) sample of women (n=366, aged 40-64 years). We collected in-person interview data on perceived BC risk using the question, “Compared to the average woman your age, would you say that you are more likely to get breast cancer, less likely, or about as likely?”, and measured BC worry using the question “How often do you worry about getting breast cancer?”, with response options ranging from rarely or never to all the time. Objective risk was assessed through calculating 5-year risk estimates from the Gail model. Using the clinical threshold of ≥ 1.67%, 11% of the sample were categorized as high-risk (hereafter clinical high-risk). We also compared women's personal 5-year risk score to that of the 5-year risk score produced by the Gail model for an average women of the same age as participants, and categorized 23% of the sample as high-risk if personal risk score was ≥0.25 greater than the average women's risk score (hereafter comparative high-risk). Women whose risk scores did not meet the above thresholds were considered average-risk. We used binary and ordinal logistic regression to examine the association of concordance of perceived and objective risk with socioedemographic factors and BC worry. The majority of women (81%) correctly perceived their risk, with the proportion of correct risk perception higher in average-risk women (87%) than in high-risk women (36%). Accurate risk perception (i.e., concordance between perceived and objective risk) was lowest in women who were U.S.-born, English-speakers, had higher health literacy and were non-Hispanic white (e.g., 55% of whites vs. 88% and 78% in Hispanic and African American women respectively had correct risk perceptions relative to clinical risk). Women with family history of BC were also more likely to have inaccurate perceived risk (57% vs. 85%). Compared to average-risk women with low perceived risk, women who perceive their BC risk to be high, regardless of their objective risk, had higher BC worry while women with low perceived risk but high objective risk had lower BC worry. After adjusting for race/ethnicity, language acculturation, education and family history, average-risk women who perceived themselves to be at higher risk continued to have statistically significantly higher odds of BC worry (OR=3.00, 95% CI:1.60-5.62 for clinical risk, and OR=3.96, 95% CI: 1.96-7.98 for comparative risk, both relative to average-risk women with low perceived risk). In conclusion, while the majority of women correctly perceived their risk for breast cancer, a substantial proportion of high-risk women inaccurately perceived themselves to be at average risk and/or lower risk than average women of the same age. High perceived risk predicted higher BC worry in both average- and high-risk women. Increasing women's knowledge of their breast cancer risk may improve inaccurate risk perception and inappropriate BC worry, and help women better appraise their risk management options. Citation Format: Ayana K. April-Sanders, Parisa Tehranifar. Concordance between objective and perceived breast cancer risk and breast cancer worry in racially diverse and immigrant women. [abstract]. In: Proceedings of the Eighth AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 13-16, 2015; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2016;25(3 Suppl):Abstract nr B54.

A pilot randomized clinical trial evaluating the impact of genetic counseling for serious mental illnesses.

The serious mental illnesses schizophrenia, schizoaffective disorder, and bipolar disorder are complex conditions affecting 1% to 4% of the population. Individuals with serious mental illnesses express interest in genetic counseling, an intervention showing promise for increasing patient knowledge and adaptation. This trial aimed to evaluate the effects of genetic counseling for people with serious mental illnesses as compared to an educational intervention or wait list. A pilot 3-arm (each n = 40; genetic counseling, a control intervention involving an educational booklet, or wait list), parallel-group, randomized clinical trial was conducted from September 2008 through November 2011 in Vancouver, Canada. Participants with schizophrenia, bipolar disorder, or schizoaffective disorder (DSM-IV) completed outcome measures assessing knowledge, risk perception, internalized stigma, and perceived control over illness at baseline and 1-month follow-up. The Brief Symptom Inventory was administered to control for current symptoms. Analyses included linear mixed-effects models and χ(2) tests. Knowledge increased for genetic counseling/educational booklet compared to wait list at follow-up (LRT1 = 19.33, Holm-adjusted P = .0003, R(2)LMM(m) = 0.17). Risk perception accuracy increased at follow-up for genetic counseling compared to wait list (Yates continuity corrected χ(2)1 = 9.1, Bonferroni P = .003) and educational booklet (Yates continuity corrected χ(2)1 = 8.2, Bonferroni P = .004). There were no significant differences between groups for stigma or perceived control scores. Genetic counseling and the educational booklet improved knowledge, and genetic counseling, but not the educational booklet, improved risk perception accuracy for this population. The impact of genetic counseling on internalized stigma and perceived control is worth further investigation. Genetic counseling should be considered for patients with serious mental illnesses. ClinicalTrials.gov identifier: NCT00713804.

Abstract P2-09-23: Factors associated with BRCA genetic testing intention and uptake among Orthodox Jewish women

Abstract Background: Ashkenazi Jews have a 1 in 40 prevalence of carrying a BRCA1/2 mutation, mainly due to 3 founder mutations. Prior literature suggests that population-based genetic testing among Ashkenazi Jews is cost-effective and may detect over 50% more mutation carriers than family history-based screening. Orthodox Jewish women are an understudied population with unique social, cultural, and religious factors that may influence BRCA genetic testing. The aim of our study was to examine factors associated with BRCA genetic testing intention/uptake among the Orthodox Jewish community. Methods: A one-time online survey was distributed to Orthodox Jewish women by 3 shuls from Washington Heights, NY (53% response rate) and through additional referrals. The questionnaire obtained information regarding demographics, breast cancer risk factors, genetic testing knowledge, decision self-efficacy, perceived breast cancer risk, breast cancer worry, and religious and cultural factors affecting medical decision-making. The Tyrer-Cuzick model was used to calculate lifetime breast cancer risk and accurate risk perception was defined as within +/-10% of actual lifetime risk. Descriptive statistics and multivariable logistic regression models were used to identify independent predictors of genetic testing intention/uptake. Results: Among 342 evaluable participants, median age was 26 years (range, 19-77); 92% were Ashkenazi and 8% Ashkenazi/Sephardi; 98% had a college education, including 47% with post-graduate degrees. Despite being highly educated, only 54% of women had adequate genetic testing knowledge. Median lifetime breast cancer risk was 16% (range, 2.3-60.9) and only 44% had accurate breast cancer risk perceptions. Although 48% had a family history of breast cancer and 16% had a relative that tested positive for BRCA1/2 mutation, only 5% had undergone BRCA testing while 48% had the intention of undergoing genetic testing. Higher lifetime breast cancer risk, high decision self-efficacy regarding genetic testing, overestimation of breast cancer risk, and increased breast cancer worry were associated with genetic testing intention/uptake. The most important factors in the decision to have BRCA testing were to help prevent dying of cancer (55%), to help prevent getting cancer (54%), and effect on children (40%). Multivariable analysis of factors associated with BRCA genetic testing intention/uptake OR95% CIp-valueDecision Self-Efficacy (range, 0 [not confident] - 4 [very confident])1.41.02-1.980.038Actual Lifetime Breast Cancer Risk (range, 0 - 100%)1.11.03-1.100.0005Accuracy in Breast Cancer Risk Perception Accurate (referent)1.0--Underestimate1.20.50-2.850.691Overestimate2.61.45-4.610.001Breast Cancer Worry (range, 1 [none] - 7 [worry all of the time])1.51.18-1.980.001 Conclusions: By understanding the religious and cultural issues regarding genetic testing in the Orthodox Jewish community, we can develop targeted interventions designed to enhance decision self-efficacy and improve accuracy of breast cancer risk perceptions to decrease unnecessary worry. This may in turn increase informed decision-making about BRCA genetic testing and implementation of cancer prevention strategies among Ashkenazi Jews. Citation Format: Trivedi MS, Tang EY, Kukufka R, Chung WK, David R, Respler L, Leifer S, Schechter I, Crew KD. Factors associated with BRCA genetic testing intention and uptake among Orthodox Jewish women. [abstract]. In: Proceedings of the Thirty-Eighth Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2015 Dec 8-12; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2016;76(4 Suppl):Abstract nr P2-09-23.

Narcissistic personality and risk perception among Chinese aviators: The mediating role of promotion focus.

Optimism bias is a crucial feature of risk perception that leads to increased risk-taking behaviour, which is a particularly salient issue among pilots in aviation settings due to the high-stakes nature of flight. The current study sought to address the roles of narcissism and promotion focus on optimism bias in risk perception in aviation context. Participants were 239 male flight cadets from the Civil Aviation Flight University of China who completed the Narcissistic Personality Inventory-13, the Work Regulatory Focus Scale, and an indirect measure of unrealistic optimism in risk perception, which measured risk perception for the individual and the risk assumed by other individuals performing the same task. Higher narcissism increased the likelihood of underestimating personal risks, an effect that was mediated by high promotion focus motivation, such that high narcissism led to high promotion focus motivation. The findings have important implications for improving the accuracy of risk perception in aviation risks among aviators.

A Comparison of Actual and Perceived Sexual Risk Among Older Adults

Sexual risk among older adults (OAs) is prevalent, though little is known about the accuracy of sexual risk perceptions. Thus, the aim was to determine the accuracy of sexual risk perceptions among OAs by examining concordance between self-reported sexual risk behaviors and perceived risk. Data on OAs aged 50 to 92 were collected via Amazon.com’s Mechanical Turk. Frequency of sexual risk behaviors (past six months) were reported along with perceived risk, namely, sexually transmitted infection (STI) susceptibility. Accuracy categories (accurate, underestimated, overestimated) were established based on dis/concordance between risk levels (low, moderate, high) and perceived risk (not susceptible, somewhat susceptible, very susceptible). Approximately half of the sample reported engaging in vaginal (49%) and/or oral sex (43%) without a condom in the past six months. However, approximately two-thirds of the sample indicated they were “not susceptible” to STIs. No relationship was found between risk behaviors and risk perceptions, and approximately half (48.1%) of OAs in the sample underestimated their risk. Accuracy was found to decrease as sexual risk level increased, with 93.1% of high-risk OAs underestimating their risk. Several sexual risk behaviors are prevalent among OAs, particularly men. However, perception of risk is often inaccurate and warrants attention.

Decision aids for people considering taking part in clinical trials.

Several interventions have been developed to promote informed consent for participants in clinical trials. However, many of these interventions focus on the content and structure of information (e.g. enhanced information or changes to the presentation format) rather than the process of decision making. Patient decision aids support a decision making process about medical options. Decision aids support the decision process by providing information about available options and their associated outcomes, alongside information that enables patients to consider what value they place on particular outcomes, and provide structured guidance on steps of decision making. They have been shown to be effective for treatment and screening decisions but evidence on their effectiveness in the context of informed consent for clinical trials has not been synthesised. To assess the effectiveness of decision aids for clinical trial informed consent compared to no intervention, standard information (i.e. usual practice) or an alternative intervention on the decision making process. We searched the following databases and to March 2015: Cochrane Central Register of Controlled Trials (CENTRAL), The Cochrane Library; MEDLINE (OvidSP) (from 1950); EMBASE (OvidSP) (from 1980); PsycINFO (OvidSP) (from 1806); ASSIA (ProQuest) (from 1987); WHO International Clinical Trials Registry Platform (ICTRP) (http://apps.who.int/trialsearch/); ClinicalTrials.gov; ISRCTN Register (http://www.controlled-trials.com/isrctn/). We also searched reference lists of included studies and relevant reviews. We contacted study authors and other experts. There were no language restrictions. We included randomised and quasi-randomised controlled trials comparing decision aids in the informed consent process for clinical trials alone, or in conjunction with standard information (such as written or verbal) or alongside alternative interventions (e.g. paper-based versus web-based decision aids). Included trials involved potential trial participants, or their guardians, being asked to consider participating in a real or hypothetical clinical trial. At least two authors independently assessed studies for inclusion, extracted reported data and assessed risk of bias. Findings were pooled where appropriate. We used GRADE to assess the quality of the evidence for each outcome. We identified one study (290 randomised participants) that investigated the effectiveness of decision aids compared to standard information in the informed consent process for clinical trials. This study reported two separate decision aid randomised controlled trials (RCTs). The decision aid trials were nested within two different parent trials focusing on breast cancer in postmenopausal women. One trial focused on informed consent for treatment in women who had previously had surgery for ductal carcinoma in situ (DCIS), the other on informed consent for prevention in women at high risk for breast cancer. Two different decision aids were used in these RCTs, and were compared with standard information.The pooled findings highlight the uncertainty surrounding most reported outcomes, including knowledge, decisional conflict, anxiety, trial participation and attrition. There was very low quality evidence that decision aids lower levels of decisional regret to a small degree (MD -5.53, 95% CI -10.29 to -0.76). No data were identified on several prespecified primary outcomes, including accurate risk perception, values-based decision, or whether potential participants recognised that a decision needed to be made, were able to identify features of options that matter most to individuals, or were involved in the decision. There was insufficient evidence to determine whether decision aids to support the informed consent process for clinical trials are more effective than standard information. Additional well designed, adequately powered clinical trials in more diverse clinical and social populations are needed to strengthen the results of this review. More generally, future research on which outcomes are most relevant for assessment in this context would be helpful.

Abstract PR01: Knowledge, attitudes, and uptake of breast cancer chemoprevention in a multi-ethnic cohort of high-risk women

Abstract Background: Chemoprevention with anti-estrogens, such as tamoxifen, raloxifene, and aromatase inhibitors, has been shown to reduce breast cancer incidence in high-risk women; however, uptake remains low (&amp;lt;5%). We examined knowledge, attitudes, and uptake of breast cancer chemoprevention in a racially/ethnically diverse high-risk population seen at an urban breast center. Methods: We enrolled high-risk women and those with newly diagnosed ductal carcinoma in situ (DCIS), who were seen for an initial consultation by medical oncology at Columbia University Medical Center. Women eligible for chemoprevention with anti-estrogens had a 5-year breast cancer risk ≥1.67% or lifetime risk ≥20% according to the Gail or Tyrer-Cuzick models, lobular carcinoma in situ (LCIS), DCIS, or BRCA mutation. Patients completed a baseline questionnaire collecting information on health literacy, numeracy, breast cancer knowledge, perceived breast cancer risk, reasons for taking preventive actions, and attitudes toward chemoprevention using validated measures. Demographic and clinical data, including chemoprevention uptake and type of anti-estrogen, were collected from medical chart review. Results: From August 2012 to July 2014, 69 women were enrolled and 45 were evaluable. Among evaluable women, median age was 51.5 years (range, 31.8-76.4); 51% were pre-menopausal; race/ethnicity, white/Hispanic/black/Asian/other (%): 49/24/16/9/2; risk category, elevated breast cancer risk/LCIS/DCIS/BRCA mutation (%): 49/18/29/4. Mean health literacy score was 0.74 (score range 0-4, lower scores indicate higher literacy) and 31% met criteria for low numeracy. At baseline, only 49% demonstrated good breast cancer knowledge and 45% perceived themselves to be at higher risk for breast cancer than the general population. Excluding women with DCIS, median lifetime breast cancer risk according to the Gail or Tyrer-Cuzick models was 29.2% (range, 10.3-92) and 42% had accurate risk perceptions (perceived risk within 10% of estimated lifetime risk). The most common reasons for wanting to take preventive action to lower breast cancer risk included to live longer (98%), to improve health (91%), and to do it for family (87%). Twenty-nine (64%) women had previously heard of a prescription medicine to prevent breast cancer, but only 34% had ever thought about taking an anti-estrogen for prevention. The most common concerns about side effects with tamoxifen were blood clots (47%) and uterine cancer (40%); with raloxifene, blood clots (77%); and with aromatase inhibitors, osteoporosis (59%) and arthritis symptoms (36%). Thirty (68%) women felt like they had enough information following the initial visit with the medical oncologist to decide whether or not to take chemoprevention. Overall, 22 (49%) started an anti-estrogen: 54% tamoxifen, 14% raloxifene, and 32% an aromatase inhibitor. The chemoprevention uptake rate was 69% for DCIS and 41% for the other risk categories combined. Conclusions: In a multi-ethnic cohort of high-risk women, less than half demonstrated sufficient breast cancer knowledge and had accurate breast cancer risk perceptions. After consultation with a medical oncologist, over two-thirds felt they had sufficient information for chemoprevention decision-making. Our chemoprevention uptake rate was relatively high compared to the published literature, which may reflect the highly select women referred to a breast center and the comfort level of medical oncologists in prescribing anti-estrogens. Citation Format: Meghna S. Trivedi, Laura Reimers, Katherine Infante, Dawn L. Hershman, Matthew Maurer, Kevin Kalinsky, Stephanie Aguilar, Rossy Sandoval, Maria C. Alvarez, Rita Kukafka, Katherine D. Crew. Knowledge, attitudes, and uptake of breast cancer chemoprevention in a multi-ethnic cohort of high-risk women. [abstract]. In: Proceedings of the Thirteenth Annual AACR International Conference on Frontiers in Cancer Prevention Research; 2014 Sep 27-Oct 1; New Orleans, LA. Philadelphia (PA): AACR; Can Prev Res 2015;8(10 Suppl): Abstract nr PR01.

Impact of provision of cardiovascular disease risk estimates to healthcare professionals and patients: a systematic review

ObjectiveTo systematically review whether the provision of information on cardiovascular disease (CVD) risk to healthcare professionals and patients impacts their decision-making, behaviour and ultimately patient health.DesignA systematic review.Data sourcesAn electronic...

Predicting Later Study Withdrawal in Participants Active in a Longitudinal Birth Cohort Study for 1 Year: The TEDDY Study

To identify predictors of later study withdrawal among participants active in The Environmental Determinants of Diabetes in the Young (TEDDY) for 1 year. Multiple logistic regression was used to discriminate 3,042 children active in TEDDY for the first 3 years from 432 children who withdrew in Years 2 or 3. Predictor variables were tested in blocks-demographic, maternal lifestyle behaviors, stress and child illness, maternal reactions to child's increased diabetes risk, in-study behaviors-and a final best model developed. Few demographic factors predicted study withdrawal. Maternal lifestyle behaviors, accuracy of the mother's risk perception, and in-study behaviors were more important. Frequent child illnesses were associated with greater study retention. Demographic measures are insufficient predictors of later study withdrawal among those active in a study for at least 1 year; behavioral/psychological factors offer improved prediction and guidance for the development of retention strategies.

Impact of Genetic Counseling in Women with a Family History of Breast Cancer in Italy.

As the impact of breast cancer (BC) risk assessment in asymptomatic women with a family history of BC had never been explored in Italy, we performed a study on a retrospective series of women who had undergone BC risk assessment. To this aim, a semi-structured telephone interview was administered to 82 women. Most participants considered the information received as clear (96.2 %) and helpful (76.8 %). Thirty-eight (46.3 %) stated that their perceived risk of BC had changed after the counseling: for 40.2 % it had decreased, for 6.1 % increased; however, women highly overestimating their risk at the baseline (≥ 4-fold) failed to show improvements in risk perception accuracy. Sixty-six women (80.5 %) stated they had followed the recommended surveillance, while 19.5 % had not, mainly due to difficulties in arranging examinations. Most women (89.0 %) had shared the information with their relatives, with 57.3 % reporting other family members had undertaken the recommended surveillance. BC risk assessment was associated with high rates of satisfaction and had a favorable impact on risk perception in a subgroup of women. The impact on surveillance adhesion extended to relatives. Organized programs for identification and surveillance may help identify a larger fraction of at-risk women and overcome the reported difficulties in arranging surveillance.