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.

'It is not entirely healthy.' A qualitative study into public appraisals of uncertain risks of chemical substances in food.

For some chemical substances in food, scientific uncertainty prevents definitive statements about the presence of risk for human health. In this qualitative study, we explored the public's understanding and risk appraisal of these substances. During semi-structured interviews, participants from the public were presented with inconclusive risk information about either a food additive or one of two food contaminants. Findings show that interviewees had no prior knowledge and constructed their risk appraisal on the spot. Results suggest that generic and case specific beliefs and inferences affect understanding and appraisal. Respondents' interpretations of the risk messages used in this study were often not in line with what the message intended to convey. In addition, specific use of scientific jargon was associated with increased risk. In general, respondents were more apprehensive about the presence of the chemical in food than that they were worried about the chance of experiencing health effects.

What benefits and harms are important for a decision about cervical screening? A study of the perspective of different subgroups of women.

Background: In cervical screening programs, women typically receive information leaflets to support their decision about participation. However, these leaflets are often based on what experts consider important benefits and harms of screening and not what women themselves consider important to know. Objective: To identify which benefits and harms women consider important for making a decision about cervical screening. Design: Cross-sectional study. Setting and participants: Women from the Dutch target group of cervical screening (N=248; 30-60 years), recruited through an online access panel. Main variables studied: Perceived importance of different benefits and harms of cervical screening, assessed through two rating items ("How important is the information about [this harm/benefit] for your decision?" and "For me it is a [benefit/harm] that participating in the screening program leads to [the benefit/harm]"), and one ranking item ("Rank the information according to their importance for your own choice"). Results: Women overall considered the benefits of cervical screening more important than the harms or disadvantages. The most important harm according to women was the chance of false positive results (M=4.88; SD=1.75). Differences between those with lower and higher numeracy/health literacy were found regarding several aspects, e.g. for the chance of false positive results, the chance of false negative results, the chance of overtreatment. Discussion and conclusion: The results suggest that leaflets could include more explicit information about false positive results.

How Health Care Professionals Evaluate a Digital Intervention to Improve Medication Adherence: Qualitative Exploratory Study.

BACKGROUND: Medication nonadherence poses a serious and a hard-to-tackle problem for many chronic diseases. Electronic health (eHealth) apps that foster patient engagement and shared decision making (SDM) may be a novel approach to improve medication adherence. OBJECTIVE: The aim of this study was to investigate the perspective of health care professionals regarding a newly developed digital app aimed to improve medication adherence. Familial hypercholesterolemia (FH) was chosen as a case example. METHODS: A Web-based prototype of the eHealth app-MIK-was codesigned with patients and health care professionals. After user tests with patients, we performed semistructured interviews and user tests with 12 physicians from 6 different hospitals to examine how the functionalities offered by MIK could assist physicians in their consultation and how they could be integrated into daily clinical practice. Qualitative thematic analysis was used to identify themes that covered the physicians' evaluations. RESULTS: On the basis of the interview data, 3 themes were identified, which were (1) perceived impact on patient-physician collaboration; (2) perceived impact on the patient's understanding and self-management regarding medication adherence; and (3) perceived impact on clinical decisions and workflow. CONCLUSIONS: The eHealth app MIK seems to have the potential to improve the consultation between the patient and the physician in terms of collaboration and patient engagement. The impact of eHealth apps based on the concept of SDM for improving medication-taking behavior and clinical outcomes is yet to be evaluated. Insights will be useful for further development of eHealth apps aimed at improving self-management by means of patient engagement and SDM.

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.

Lay perceptions of predictive testing for diabetes based on DNA test results versus family history assessment: a focus group study.

BACKGROUND: This study assessed lay perceptions of issues related to predictive genetic testing for multifactorial diseases. These perceived issues may differ from the "classic" issues, e.g. autonomy, discrimination, and psychological harm that are considered important in predictive testing for monogenic disorders. In this study, type 2 diabetes was used as an example, and perceptions with regard to predictive testing based on DNA test results and family history assessment were compared. METHODS: Eight focus group interviews were held with 45 individuals aged 35-70 years with (n = 3) and without (n = 1) a family history of diabetes, mixed groups of these two (n = 2), and diabetes patients (n = 2). All interviews were transcribed and analysed using Atlas-ti. RESULTS: Most participants believed in the ability of a predictive test to identify people at risk for diabetes and to motivate preventive behaviour. Different reasons underlying motivation were considered when comparing DNA test results and a family history risk assessment. A perceived drawback of DNA testing was that diabetes was considered not severe enough for this type of risk assessment. In addition, diabetes family history assessment was not considered useful by some participants, since there are also other risk factors involved, not everyone has a diabetes family history or knows their family history, and it might have a negative influence on family relations. Respect for autonomy of individuals was emphasized more with regard to DNA testing than family history assessment. Other issues such as psychological harm, discrimination, and privacy were only briefly mentioned for both tests. CONCLUSION: The results suggest that most participants believe a predictive genetic test could be used in the prevention of multifactorial disorders, such as diabetes, but indicate points to consider before both these tests are applied. These considerations differ with regard to the method of assessment (DNA test or obtaining family history) and also differ from monogenic disorders.

Monitoring the level of government trust, risk perception and intention of the general public to adopt protective measures during the influenza A (H1N1) pandemic in The Netherlands.

BACKGROUND: During the course of an influenza pandemic, governments know relatively little about the possibly changing influence of government trust, risk perception, and receipt of information on the public's intention to adopt protective measures or on the acceptance of vaccination. This study aims to identify and describe possible changes in and factors associated with public's intentions during the 2009 influenza A (H1N1) pandemic in the Netherlands. METHODS: Sixteen cross-sectional telephone surveys were conducted (N = 8060) between April - November 2009. From these repeated measurements three consecutive periods were categorized based on crucial events during the influenza A (H1N1) pandemic. Time trends in government trust, risk perception, intention to adopt protective measures, and the acceptance of vaccination were analysed. Factors associated with an intention to adopt protective measures or vaccination were identified. RESULTS: Trust in the government was high, but decreased over time. During the course of the pandemic, perceived vulnerability and an intention to adopt protective measures increased. Trust and vulnerability were associated with an intention to adopt protective measures in general only during period one. Higher levels of intention to receive vaccination were associated with increased government trust, fear/worry, and perceived vulnerability. In periods two and three receipt of information was positively associated with an intention to adopt protective measures. Most respondents wanted to receive information about infection prevention from municipal health services, health care providers, and the media. CONCLUSIONS: The Dutch response to the H1N1 virus was relatively muted. Higher levels of trust in the government, fear/worry, and perceived vulnerability were all positively related to an intention to accept vaccination. Only fear/worry was positively linked to an intention to adopt protective measures during the entire pandemic. Risk and crisis communication by the government should focus on building and maintaining trust by providing information about preventing infection in close collaboration with municipal health services, health care providers, and the media.