Decision-making in breast cancer screening: A qualitative exploration of the match between women's beliefs and screening information in the Netherlands.

OBJECTIVE: Decision-making about breast cancer screening requires balanced and understandable information that takes prior beliefs of screening invitees into account. METHODS: In qualitative interviews with 22 Dutch women who were invited for screening for the first time (49-52 years of age, varying health literacy levels), we gained insight in their beliefs on breast cancer and breast cancer screening, and explored how the current screening information matched these beliefs. RESULTS: Breast cancer was perceived as an unpredictable, severe, and uncontrollable disease. Women considered screening as self-evident and an important mean to gain some control over breast cancer. Information on benefits of screening was in line with women's prior beliefs and confirmed women's main reasons to participate. Information about false-positive outcomes, overtreatment, and false negative outcomes did not correspond to women's prior beliefs and this information was generally not considered relevant for decision-making. Preferences for additional information merely concerned practical information on the screening procedure. CONCLUSION: Complex information on the harms of screening does not match women's beliefs and is not taken into account in their decision-making. PRACTICE IMPLICATIONS: Information regarding breast cancer screening could be further aligned to prior beliefs by taking into account values, filling knowledge gaps and correct misconceptions.

Breast cancer patients' visual attention to information in hospital report cards: An eye-tracking study on differences between younger and older female patients.

To (1) explore how women visually attend to a hospital report card (HRC), (2) explore whether visual attention of younger and older women (patients and non-patients) differs. Eye-tracking study with a short survey. Participants (N = 37) were provided with a hypothetical realistic HRC. Total dwell times and fixation counts were measured while participants viewed the information. Overall, no differences existed between younger and older women. Visual attention to the hospital of choice (vs not of choice) and to indicators perceived as most important (vs least important) did not differ. However, women with higher health literacy looked longer at the HRC than women with lower health literacy. Also, per fixation, older patients (vs younger patients) looked longer at the hospital of choice and at indicators perceived most important. Pre-existing conceptions of what information is relevant might result in more in-depth information processing among older patients than younger patients. In general, differences in level of health literacy, rather than (chronological) age, seem to be relevant to take into account when designing and/or updating HRCs.

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.

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.