Do Preferred Risk Formats Lead to Better Understanding? A Multicenter Controlled Trial on Communicating Familial Breast Cancer Risks Using Different Risk Formats.

PURPOSE: Counselees' preferences are considered important for the choice of risk communication format and for improving patient-centered care. We here report on counselees' preferences for how risks are presented in familial breast cancer counseling and the impact of this preferred format on their understanding of risk. PATIENTS AND METHODS: As part of a practice-based randomized controlled trial, 326 unaffected women with a family history of breast cancer received their lifetime risk in one of five presentation formats after standard genetic counseling in three Dutch familial cancer clinics: 1) in percentages, 2) in frequencies ("X out of 100"), 3) in frequencies plus graphical format (10×10 human icons), 4) in frequencies and 10-year age-related risk and 5) in frequencies and 10-year age-related risk plus graphical format. Format preferences and risk understanding (accuracy) were assessed at 2-week follow-up by a questionnaire, completed by 279/326 women. RESULTS: The most preferred risk communication formats were numbers combined with verbal descriptions (37%) and numbers only (26%). Of the numerical formats, most (55%) women preferred percentages. The majority (73%) preferred to be informed about both lifetime and 10-year age-related risk. Women who had received a graphical display were more likely to choose a graphical display as their preferred format. There was no significant effect between the intervention groups with regard to risk accuracy. Overall, women given risk estimates in their preferred format had a slightly better understanding of risk. CONCLUSION: The results suggest that the accuracy of breast cancer risk estimation is slightly better for women who had received this information in their preferred format, but the risk format used had no effect on women's risk accuracy. To meet the most frequent preference, counselors should consider providing a time frame of reference (eg, risk in the next 10 years) in a numerical format, in addition to lifetime risk.

Where there's smoke, there's fire: focal points for risk communication.

Large fires involving hazardous materials are often characterized by failing crisis communication. In this study, we compared opinions of experts regarding the risks of major fires to lay beliefs using a mental models approach. Amongst lay people this revealed relevant knowledge gaps and beliefs in opposition to those held by experts. While, experts considered the chance of getting cancer from inhaling smoke from a chemical fire extremely small, most lay people thought that even at a great distance, the chance of getting cancer to be large. To improve crisis communication about risk in a case of large chemical fires, and reduce the potential for messages to be misunderstood, distrusted or dismissed, we recommend a clarification of cancer risk in communications about public health emergencies such as chemical fires, for which lay people equate even small exposures to carcinogenic chemicals make one more likely to get cancer later in life.

The effectiveness of a graphical presentation in addition to a frequency format in the context of familial breast cancer risk communication: a multicenter controlled trial.

BACKGROUND: Inadequate understanding of risk among counselees is a common problem in familial cancer clinics. It has been suggested that graphical displays can help counselees understand cancer risks and subsequent decision-making. We evaluated the effects of a graphical presentation in addition to a frequency format on counselees' understanding, psychological well-being, and preventive intentions. DESIGN: Multicenter controlled trial. SETTING: Three familial cancer clinics in the Netherlands. PARTICIPANTS: Unaffected women with a breast cancer family history (first-time attendees). INTERVENTION: Immediately after standard genetic counseling, an additional consultation by a trained risk counselor took place where women were presented with their lifetime breast cancer risk in frequency format (X out of 100) (n = 63) or frequency format plus graphical display (10 × 10 human icons) (n = 91). MAIN OUTCOME MEASURES: understanding of risk (risk accuracy, risk perception), psychological well-being, and intentions regarding cancer prevention. Measurements were assessed using questionnaires at baseline, 2-week and 6-month follow-up. RESULTS: Baseline participant characteristics did not differ between the two groups. In both groups there was an increase in women's risk accuracy from baseline to follow-up. No significant differences were found between women who received the frequency format and those who received an additional graphical display in terms of understanding, psychological well-being and intentions regarding cancer prevention. The groups did not differ in their evaluation of the process of counseling. CONCLUSION: Women's personal risk estimation accuracy was generally high at baseline and the results suggest that an additional graphical display does not lead to a significant benefit in terms of increasing understanding of risk, psychological well-being and preventive intentions. TRIAL REGISTRATION: Current Controlled Trials http://ISRCTN14566836.

Causal beliefs and perceptions of risk for diabetes and cardiovascular disease, The Netherlands, 2007.

INTRODUCTION: Understanding people's perceptions of disease risk and how these perceptions compare with actual risk models may improve the effectiveness of risk communication. This study examined perceived disease risk and causal beliefs for type 2 diabetes and cardiovascular disease (CVD), the relationship between self-reported risk factors and perceived disease risk, and the influence of causal beliefs on perceived disease risk in people at increased risk. METHODS: The sample (n = 255) consisted of people who were at increased risk for diabetes and CVD (aged 57-79 y). Participants completed a postal questionnaire assessing risk factors, perceived risk, and causal beliefs for diabetes and CVD. We used regression analyses to examine the relationship between risk factors and perceived disease risk and to explore how causal beliefs affect the relationship between risk factors and perceived disease risk. RESULTS: Associations between risk factors and perceived diabetes and CVD risks were weak. Perceived risk, causal beliefs, and explained variance of risk factors on perceived risk were lower for diabetes than for CVD. Stronger beliefs concerning 1) overweight as a cause of diabetes and 2) smoking as a cause of CVD strengthened the association between these risk factors and perceived disease risk. CONCLUSION: Although participants seemed to have some understanding of disease causation, they only partially translated their risk factors into accurate perceptions of risk. To improve understanding of risk information, health professionals may need to educate patients on how personal risk factors can contribute to the development of diabetes and CVD.

Using family history information to promote healthy lifestyles and prevent diseases; a discussion of the evidence.

BACKGROUND: A family history, reflecting genetic susceptibility as well as shared environmental and behavioral factors, is an important risk factor for common chronic multifactorial diseases such as cardiovascular diseases, type 2 diabetes and many cancers. DISCUSSION: The purpose of the present paper is to discuss the evidence for the use of family history as a tool for primary prevention of common chronic diseases, in particular for tailored interventions aimed at promoting healthy lifestyles. The following questions are addressed: (1) What is the value of family history information as a determinant of personal disease risk?; (2)How can family history information be used to motivate at-risk individuals to adopt and maintain healthy lifestyles in order to prevent disease?; and (3) What additional studies are needed to assess the potential value of family history information as a tool to promote a healthy lifestyle? SUMMARY: In addition to risk assessment, family history information can be used to personalize health messages, which are potentially more effective in promoting healthy lifestyles than standardized health messages. More research is needed on the evidence for the effectiveness of such a tool.

Perceived risk and representations of cardiovascular disease and preventive behaviour in people diagnosed with familial hypercholesterolemia: a cross-sectional questionnaire study.

Perceived risk and representations of cardiovascular disease (CVD), and preventive behaviour of people diagnosed with Familial Hypercholesterolemia by DNA testing (N = 81) were assessed. In general, participants perceived their own CVD risk as being relatively low. While participants reported almost optimal medication adherence (99%), only 49 per cent reported following recommendations concerning diet and physical activity. Family history of CVD was associated with both risk perception and the adoption of a healthy lifestyle. In their communications with FH-screened positives, health professionals should be aware that people may underestimate CVD risk, and should stress how behaviour change can reduce the risk.