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The arrival of the COVID-19 vaccine has been accompanied by increased discussion of vaccine hesitancy. However, it is unclear if there are shared patterns between general vaccine hesitancy and COVID-19 vaccine rejection, or if these are two different concepts. This study characterized rejection of a hypothetical COVID-19 vaccine, and compared patterns of association between general vaccine hesitancy and COVID-19 vaccine rejection. The survey was conducted online March 20-22, 2020. Participants answered questions on vaccine hesitancy and responded if they would accept the vaccine given different safety and effectiveness profiles. We assessed differences in COVID-19 rejection and general vaccine hesitancy through logistic regressions. Among 713 participants, 33.0% were vaccine hesitant, and 18.4% would reject a COVID-19 vaccine. Acceptance varied by effectiveness profile: 10.2% would reject a 95% effective COVID-19 vaccine, but 32.4% would reject a 50% effective vaccine. Those vaccine hesitant were significantly more likely to reject COVID-19 vaccination [odds ratio (OR): 5.56, 95% confidence interval (CI): 3.39, 9.11]. In multivariable logistic regression models, there were similar patterns for vaccine hesitancy and COVID-19 vaccine rejection by gender, race/ethnicity, family income, and political affiliation. But the direction of association flipped by urbanicity (P=0.0146, with rural dwellers less likely to be COVID-19 vaccine rejecters but more likely to be vaccine hesitant in general), and age (P=0.0037, with fewer pronounced differences across age for COVID-19 vaccine rejection, but a gradient of stronger vaccine hesitancy in general among younger ages). During the COVID-19 epidemic's early phase, patterns of vaccine hesitancy and COVID-19 vaccine rejection were relatively similar. A significant minority would reject a COVID-19 vaccine, especially one with less-than-ideal effectiveness. Preparations for introducing the COVID-19 vaccine should anticipate substantial hesitation and target concerns, especially among younger adults. [ABSTRACT FROM AUTHOR]

Perceptions of infectious diseases are important predictors of whether people engage in disease‐specific preventive behaviors. Having accurate beliefs about a given infectious disease has been found to be a necessary condition for engaging in appropriate preventive behaviors during an infectious disease outbreak, while endorsing conspiracy beliefs can inhibit preventive behaviors. Despite their seemingly opposing natures, knowledge and conspiracy beliefs may share some of the same psychological motivations, including a relationship with perceived risk and self‐efficacy (i.e., control). The 2015–2016 Zika epidemic provided an opportunity to explore this. The current research provides some exploratory tests of this topic derived from two studies with similar measures, but different primary outcomes: one study that included knowledge of Zika as a key outcome and one that included conspiracy beliefs about Zika as a key outcome. Both studies involved cross‐sectional data collections that occurred during the same two periods of the Zika outbreak: one data collection prior to the first cases of local Zika transmission in the United States (March–May 2016) and one just after the first cases of local transmission (July–August). Using ordinal logistic and linear regression analyses of data from two time points in both studies, the authors show an increase in relationship strength between greater perceived risk and self‐efficacy with both increased knowledge and increased conspiracy beliefs after local Zika transmission in the United States. Although these results highlight that similar psychological motivations may lead to Zika knowledge and conspiracy beliefs, there was a divergence in demographic association. [ABSTRACT FROM AUTHOR]

The objective of this research was to evaluate the impact of message framing (e.g., highlighting health disparities vs. progress toward reducing disparities) on willingness to enroll in a hypothetical research study. African-American (AA, n = 1513) and White (n = 362) adults completed an online survey about diabetes, health behaviors including physical activity, and attitudes about research. AA participants were randomized to view a general message (same message as provided to all White participants) or 1 of 4 alternate messages that framed the need for people to participate in research in terms of race and/or health disparities. Among AAs, there were no differences in willingness to enroll in the study by message frame. However, individual characteristics including younger age, female sex, attitudes about research, a sense of obligation, and community responsibility were significant predictors of willingness to enroll in the study. AA participants who received the general message were equally willing as White participants to enroll in the study. Highlighting race and health disparities in study recruitment materials may not be needed to increase interest among AAs. Factors beyond race appear to be stronger motivators for participation. Unlike previous research, racial framing did not suppress motivation to enroll in our hypothetical study. [ABSTRACT FROM AUTHOR]

Background: While the association between inadequate health literacy and adverse health outcomes has been well documented, less is known about the impact of health literacy on health perceptions, such as perceptions of control over health, and preventive health behaviors.Methods: We identified a subsample of participants (N = 707) from the Health and Retirement Study (HRS), a nationally representative sample of older adults, who participated in health literacy testing. Self-reported health literacy was measured with a literacy screening question, and objective health literacy with a summed score of items from the Test of Functional Health Literacy. We compared answers on these items to those related to participation in health behaviors such as cancer screening, exercise, and tobacco use, as well as self-referencing health beliefs.Results: In logistic regression models adjusted for gender, education, race, and age, participants with adequate self-reported health literacy (compared to poorer levels of health literacy) had greater odds of participation in mammography within the last 2 years (Odds ratio [OR] = 2.215, p = 0.01) and participation in moderate exercise two or more times per week (OR = 1.512, p = 0.03). Participants with adequate objective health literacy had reduced odds of participation in monthly breast self-exams (OR = 0.369, p = 0.004) and reduced odds of current tobacco use (OR = 0.456, p = 0.03). In adjusted linear regression analyses, self-reported health literacy made a small but significant contribution to explaining perceived control of health (β 0.151, p = <0.001) and perceived social standing (β 0.112, p = 0.002).Conclusion: In a subsample of older adult participants of the HRS, measures of health literacy were positively related to several health promoting behaviors and health-related beliefs and non-use of breast self-exams, a screening behavior of questionable benefit. These relationships varied however, between self-reported and objectively-measured health literacy. Further investigation into the specific mechanisms that lead higher literacy people to pursue health promoting actions appears clearly warranted. [ABSTRACT FROM AUTHOR]

Background: Cancer prevention and screening guidelines are ideally suited to the task of providing high-quality benefit-harm information that informs clinical practice. We systematically examined how US guidelines present benefits and harms for recommended cancer prevention and screening interventions.Methods: We included cancer screening and prevention recommendations from: 1) the United States Preventive Services Task Force, 2) the American Cancer Society, 3) the American College of Physicians, 4) the National Comprehensive Cancer Network, and 5) other US guidelines within the National Guidelines Clearinghouse. Searches took place November 20, 2013, and January 1, 2014, and updates were reviewed through July 1, 2015. Two coders used an abstraction form to code information about benefits and harms presented anywhere within a guideline document, including appendices. The primary outcome was each recommendation's benefit-harm "comparability" rating, based on how benefits and harms were presented. Recommendations presenting absolute effects for both benefits and harms received a "comparable" rating. Other recommendations received an incomplete rating or an asymmetric rating based on prespecified criteria.Results: Fifty-five recommendations for using interventions to prevent or detect breast, prostate, colon, cervical, and lung cancer were identified among 32 guidelines. Thirty point nine percent (n = 17) received a comparable rating, 14.5% (n = 8) received an incomplete rating, and 54.5% (n = 30) received an asymmetric rating.Conclusions: Sixty-nine percent of cancer prevention and screening recommendation statements either did not quantify benefits and harms or presented them in an asymmetric manner. Improved presentation of benefits and harms in guidelines would better ensure that clinicians and patients have access to the information required for making informed decisions. [ABSTRACT FROM AUTHOR]

Objectives. We sought to evaluate longitudinal trends in people's risk perceptions and vaccination intentions during the 2009 H1N1 pandemic. Methods. We used data from 10 waves of a US national survey focusing on the H1N1 pandemic (administered between May 2009 and January 2010) to conduct a longitudinal analysis of adult respondents' risk perceptions and vaccination intentions. Results. Self-reported perceived risk of becoming infected with H1N1 paralleled H1N1 activity throughout the pandemic's first year. However, intention to be vaccinated declined from 50% (May 2009) to 16% (January 2010) among those who remained unvaccinated (27% had been vaccinated by January 2010). Respondents who indicated that they had previously been vaccinated against seasonal influenza reported significantly higher H1N1 vaccination intentions than those who had not been vaccinated (67% vs 26%; P < .001). Conclusions. Reported intention to be vaccinated declined well before vaccine became available and decreased throughout the pandemic year. To the extent that prior vaccination for seasonal influenza vaccination is a strong correlate of H1N1 risk perceptions, encouraging seasonal influenza vaccination may benefit pandemic preparedness efforts. [ABSTRACT FROM AUTHOR]

With increasing frequency, patients are being asked to make complex decisions about cancer screening, prevention, and treatment. These decisions are fraught with emotion and cognitive difficulty simultaneously. Many Americans have low numeracy skills making the cognitive demands even greater whenever, as is often the case, patients are presented with risk statistics and asked to make comparisons between the risks and benefits of multiple options and to make informed medical decisions. In this commentary, we highlight 10 methods that have been empirically shown to improve patients’ understanding of risk and benefit information and/or their decision making. The methods range from presenting absolute risks using frequencies (rather than presenting relative risks) to using a risk format that clarifies how treatment changes risks from preexisting baseline levels to using plain language. We then provide recommendations for how health-care providers and health educators can best to communicate this complex medical information to patients, including using plain language, pictographs, and absolute risks instead of relative risks. [ABSTRACT FROM PUBLISHER]

Objective: To summarize existing research on individual numeracy and methods for presenting risk information to patients. Methods: We selectively retrieved articles from MEDLINE and the Social Sciences Citation Index. Results: Many Americans have low numeracy skills, a deficit that impedes effective health care. Approaches to risk communication vary in cur- rent practice, but how risks are presented can significantly affect both patients' risk perceptions and their knowledge. Conclusions: Adhering to some basic principles for presenting risk information to patients can improve understanding. However, different risk-communication methods may be needed for individuals with high versus low levels of numeracy. [ABSTRACT FROM AUTHOR]

As people increasingly turn to social media to access and create health evidence, the greater availability of data and information ought to help more people make evidence-informed health decisions that align with what matters to them. However, questions remain as to whether people can be swayed in favor of or against options by polarized social media, particularly in the case of controversial topics. We created a composite mock news article about home birth from six real news articles and randomly assigned participants in an online study to view comments posted about the original six articles. We found that exposure to one-sided social media comments with one-sided opinions influenced participants' opinions of the health topic regardless of their reported level of previous knowledge, especially when comments contained personal stories. Comments representing a breadth of views did not influence opinions, which suggests that while exposure to one-sided comments may bias opinions, exposure to balanced comments may avoid such bias. [ABSTRACT FROM AUTHOR]

Abstract: Narratives from similar others may be an effective way to increase important health behaviors. In this study, we used a narrative intervention to promote colorectal cancer screening. Researchers have suggested that people may overestimate barriers to colorectal cancer screening. We recruited participants from the US, ages 49–60 who had never previously been screened for colorectal cancer, to read an educational message about screening for the disease. One-half of participants were randomly assigned to also receive a narrative within the message (control participants did not receive a narrative). The narrative intervention was developed according to predictions of affective forecasting theory. Compared to participants who received only the educational message, participants who received the message along with a narrative reported that the barriers to screening would have less of an impact on a future screening experience. The narrative also increased risk perception for colorectal cancer and interest in screening in the next year. [Copyright &y& Elsevier]

Background: Shared decision making requires evidence to be conveyed to the patient in a way they can easily understand and compare. Patient decision aids facilitate this process. This article reviews the current evidence for how to present numerical probabilities within patient decision aids., Methods: Following the 2013 review method, we assembled a group of 9 international experts on risk communication across Australia, Germany, the Netherlands, the United Kingdom, and the United States. We expanded the topics covered in the first review to reflect emerging areas of research. Groups of 2 to 3 authors reviewed the relevant literature based on their expertise and wrote each section before review by the full authorship team., Results: Of 10 topics identified, we present 5 fundamental issues in this article. Although some topics resulted in clear guidance (presenting the chance an event will occur, addressing numerical skills), other topics (context/evaluative labels, conveying uncertainty, risk over time) continue to have evolving knowledge bases. We recommend presenting numbers over a set time period with a clear denominator, using consistent formats between outcomes and interventions to enable unbiased comparisons, and interpreting the numbers for the reader to meet the needs of varying numeracy., Discussion: Understanding how different numerical formats can bias risk perception will help decision aid developers communicate risks in a balanced, comprehensible manner and avoid accidental "nudging" toward a particular option. Decisions between probability formats need to consider the available evidence and user skills. The review may be useful for other areas of science communication in which unbiased presentation of probabilities is important.

Prenatal genetic screening should be an informed, autonomous patient choice. Extrinsic factors which influence patient decision-making threaten the ethical basis of prenatal genetic screening. Prior research in the area of medical decision-making has identified that labeling may have unanticipated effects on patient perceptions and decision-making processes. This Internet-administered study explored the impact of option labeling on the noninvasive prenatal screening (NIPS) selections of US adults. A total of 1,062 participants were recruited through Amazon Mechanical Turk (MTurk) and randomly assigned to one of three possible label sets reflecting provider-derived and industry-derived option labels used in prenatal screening. Multinomial logistic regression analysis showed option labeling had a statistically significant impact on the NIPS selections of study participants (p = .0288). Outcomes of the Satisfaction with Decision Scale (SWD) indicated option labels did not play a role in participant satisfaction with screening selection. The results of this study indicate a need for further evaluation of the impact NIPS option labeling has on patient screening decisions in real-world clinical interactions. Clinical providers and testing laboratories offering NIPS should give careful consideration to the option labels used with prenatal screening so as to minimize influence on patient screening selection and decision-making processes., (© 2019 National Society of Genetic Counselors.)

Importance: Patient disclosure to their clinician about experiencing an imminent threat is a critical step toward receiving support or assistance., Objective: To examine the frequency of patients not disclosing their experience of imminent threats to their clinician and their reasons for doing so., Design, Setting, and Participants: Survey study incorporating results from 2 national, nonprobability samples of 2011 US adults recruited from Amazon's Mechanical Turk (MTurk) from March 16 to 30, 2015, and 2499 recruited from Survey Sampling International (SSI) from November 6 to 17, 2015. Data analysis was conducted from December 20 to 28, 2018., Main Outcomes and Measures: Self-reported nondisclosure of 4 types of imminent threats (depression, suicidality, abuse, and sexual assault) to their clinician and reasons for nondisclosure., Results: There were 2011 participants in the MTurk sample (1210 [60.3%] female; 1696 [60.2%] white; mean [SD] age, 35.7 [12.4] years; age range, 18-79 years) and 2499 participants (1273 [51.0%] female; 1968 [78.8%] white; mean [SD] age, 61.0 [7.6] years; age range, 50-91 years) in the SSI sample. Among those who reported experiencing at least 1 of the 4 imminent threats, 613 of 1292 MTurk participants (47.5%) and 581 of 1453 SSI participants (40.0%) withheld information from their clinician. The most commonly endorsed reasons for withholding this information included being embarrassed (MTurk: 72.7%; SSI: 70.9%), not wanting to be judged or lectured (MTurk: 66.4%; SSI: 53.4%), and not wanting to engage in a difficult follow-up behavior (MTurk: 62.4%; SSI: 51.1%). Respondents who experienced at least 1 of the 4 imminent threats had significantly higher odds of nondisclosure in both samples if they were female (MTurk: odds ratio [OR], 1.66 [95% CI, 1.30-2.11]; and SSI: OR, 1.33 [95% CI, 1.07-1.67]) or younger (MTurk: OR, 0.99 [95% CI, 0.98-1.00]; and SSI: OR, 0.98 [95% CI, 0.97-1.00]). Worse self-rated health was also associated with nondisclosure, but only in the SSI sample (OR, 0.85 [95% CI, 0.74-0.96])., Conclusions and Relevance: This study suggests that many people withhold information from their clinicians about imminent health threats that they face. A better understanding of how to increase patients' comfort with reporting this information is critical to allowing clinicians to help patients mitigate these potentially life-threatening risks.

Vaccine refusal has an impact on public health, and the human pappillomavirus (HPV) vaccine is particularly underutilized. Research suggests that it may be difficult to change vaccine-related attitudes, and there is currently no good evidence to recommend any particular intervention strategy. One reason for vaccine hesitancy is lack of trust that vaccine harms are adequately documented and reported, yet few communication strategies have explicitly attempted to improve this trust. This study tested the possibility that data from the vaccine adverse event reporting system (VAERS) can be used to increase trust that vaccine harms are adequately researched and that potential harms are disclosed to the public, and thereby improve perceptions of vaccines. In the study, participants were randomly assigned to one of three communication interventions. All participants read the Centers for Disease Control (CDC) vaccine information statement (VIS) for the HPV vaccine. Two other groups were exposed to additional information about VAERS, either summary data or full detailed reports of serious adverse events from 2013. Results showed that the CDC's VIS alone significantly increased perceptions of vaccine benefits and decreased perceived risks. Participants who were also educated about VAERS and given summary data about the serious adverse events displayed more trust in the CDC and greater HPV vaccine acceptance relative to the VIS alone. However, exposure to the detailed VAERS reports significantly reduced trust in the CDC and vaccine acceptance. Hence, general information about the VAERS data slightly increased trust in the CDC and improved vaccine acceptance, but the specific VAERS reports negatively influenced both trust and acceptance. Implications for communicating about vaccines are discussed., (Copyright © 2016 Elsevier Ltd. All rights reserved.)

Objective: To examine the decisions of pediatric primary care physicians about their diagnostic evaluation for a child with suspected global developmental delay (GDD)., Study Design: A survey was mailed to a sample of pediatricians (n = 600) and family physicians (n = 600) randomly selected from the American Medical Association Physician Masterfile. The survey contained a clinical vignette describing a 9-month-old nondysmorphic boy with GDD. Participants were asked their initial evaluation steps (test, refer, or both test and refer) and what types of referral and/or testing they would pursue. We examined bivariate associations between physician/clinical practice characteristics and participants' evaluation decision., Results: More pediatricians than family physicians completed the survey (response rates: 55% vs 38%). Almost three-quarters of the respondents (74%) reported that their first step in a diagnostic evaluation would be to refer the child without testing, 22% would test only, and 4% would both test and refer. As their initial step, most physicians referred to a developmental pediatrician (58%), and only 5% would refer to a geneticist. The most commonly ordered test was general biochemical testing (64%). The most commonly ordered genetic test was a karyotype (39%)., Conclusions: When evaluating a child with GDD, few primary care physicians would order genetic testing or refer to a genetics specialist as a first evaluation step. Future studies should examine both barriers to and utilization of a genetic evaluation for children with GDD., (Copyright © 2015 Elsevier Inc. All rights reserved.)

For pediatric rare diseases, the number of patients available to support traditional research methods is often inadequate. However, patients who have similar diseases cluster "virtually" online via social media. This study aimed to (1) determine whether patients who have the rare diseases Fontan-associated protein losing enteropathy (PLE) and plastic bronchitis (PB) would participate in online research, and (2) explore response patterns to examine social media's role in participation compared with other referral modalities. A novel, internet-based survey querying details of potential pathogenesis, course, and treatment of PLE and PB was created. The study was available online via web and Facebook portals for 1 year. Apart from 2 study-initiated posts on patient-run Facebook pages at the study initiation, all recruitment was driven by study respondents only. Response patterns and referral sources were tracked. A total of 671 respondents with a Fontan palliation completed a valid survey, including 76 who had PLE and 46 who had PB. Responses over time demonstrated periodic, marked increases as new online populations of Fontan patients were reached. Of the responses, 574 (86%) were from the United States and 97 (14%) were international. The leading referral sources were Facebook, internet forums, and traditional websites. Overall, social media outlets referred 84% of all responses, making it the dominant modality for recruiting the largest reported contemporary cohort of Fontan patients and patients who have PLE and PB. The methodology and response patterns from this study can be used to design research applications for other rare diseases., (Copyright © 2014 by the American Academy of Pediatrics.)

Background: Many decisions can be understood in terms of actors' valuations of benefits and costs. The article investigates whether this is also true of patient medical decision making. It aims to investigate (i) the importance patients attach to various reasons for and against nine medical decisions; (ii) how well the importance attached to benefits and costs predicts action or inaction; and (iii) how such valuations are related to decision confidence., Methods: In a national random digit dial telephone survey of U.S. adults, patients rated the importance of various reasons for and against medical decisions they had made or talked to a health-care provider about during the past 2 years. Participants were 2575 English-speaking adults age 40 and older. Data were analysed by means of logistic regressions predicting action/inaction and linear regressions predicting confidence., Results: Aggregating individual reasons into those that may be regarded as benefits and those that may be regarded as costs, and weighting them by their importance to the patient, shows the expected relationship to action. Perceived benefits and costs are also significantly related to the confidence patients report about their decision., Conclusion: The factors patients say are important in their medical decisions reflect a subjective weighing of benefits and costs and predict action/inaction although they do not necessarily indicate that patients are well informed. The greater the difference between the importance attached to benefits and costs, the greater patients' confidence in their decision., (© 2011 John Wiley & Sons Ltd.)

Purpose: Population-based studies suggest underuse of radiation therapy, especially after mastectomy. Because radiation oncology is a referral-based specialty, knowledge and attitudes of upstream providers, specifically surgeons, may influence patients' decisions regarding radiation, including whether it is even considered. Therefore, we sought to evaluate surgeons' knowledge of pertinent risk information, their patterns of referral, and the correlates of surgeon knowledge and referral in specific breast cancer scenarios., Methods and Materials: We surveyed a national sample of 750 surgeons, with a 67% response rate. We analyzed responses from those who had seen at least 1 breast cancer patient in the past year (n=403), using logistic regression models to identify correlates of knowledge and appropriate referral., Results: Overall, 87% of respondents were general surgeons, and 64% saw >10 breast cancer patients in the previous year. In a scenario involving a 45-year-old undergoing lumpectomy, only 45% correctly estimated the risk of locoregional recurrence without radiation therapy, but 97% would refer to radiation oncology. In a patient with 2 of 20 nodes involved after mastectomy, 30% would neither refer to radiation oncology nor provide accurate information to make radiation decisions. In a patient with 4 of 20 nodes involved after mastectomy, 9% would not refer to radiation oncology. Fewer than half knew that the Oxford meta-analysis revealed a survival benefit from radiation therapy after lumpectomy (45%) or mastectomy (32%). Only 16% passed a 7-item knowledge test; female and more-experienced surgeons were more likely to pass. Factors significantly associated with appropriate referral to radiation oncology included breast cancer volume, tumor board participation, and knowledge., Conclusions: Many surgeons have inadequate knowledge regarding the role of radiation in breast cancer management, especially after mastectomy. Targeted educational interventions may improve the quality of care., (Copyright © 2013 Elsevier Inc. All rights reserved.)

Objective: To examine the effect of patient narratives that discuss decision processes versus patient experiences on decisions about treatments for early stage breast cancer., Methods: We recruited 300 women with no previous history of breast cancer to imagine that they had been diagnosed with early stage breast cancer and to choose between mastectomy and lumpectomy with radiation. Before learning about their treatment options, participants were randomly assigned to one of four conditions with videotaped stories from fictitious cancer survivors, using a 2 (content: experience versus process) × 2 (emotional valence: positive only vs. positive and negative) factorial design, or a control condition with no stories. We measured information search, treatment intentions, and decision satisfaction., Results: Participants viewing process narratives spent more time searching for information. Participants viewing experience narratives reported a greater ability to imagine what it was like to experience the treatments; they also evaluated their decision more positively on several dimensions., Conclusions: Process narratives appeared to guide information search, and experience narratives improved evaluations of the decision process., Practice Implications: There is no evidence that process and experience narratives 'bias' decisions in the same manner as outcome narratives. Further, their potential to focus patient attention on key information and increase patient confidence in decision making appears significant., (Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.)

Few studies have examined how specific emotions may affect decision-making processes. Anxiety may be especially relevant in health decisions such as those related to cancer in which thoughts of illness or death may be abundant. We examined associations between women's anxiety about developing breast cancer and variables related to their decision to take a medication that could reduce their chances of the disease. Six-hundred and thirty-two American women, who had an increased risk of breast cancer, reviewed a web-based decision aid about tamoxifen. We examined associations between their baseline, self-reported anxiety about developing the disease and post decision aid measures including knowledge about tamoxifen, attitude toward the medication, and behavioral intentions to look for more information and take the medication. Results showed that anxiety was not associated with knowledge about tamoxifen, but it was associated with attitude toward the medication such that women who were more anxious about developing breast cancer were more likely to think the benefits were worth the risks. Greater anxiety was also associated with greater behavioral intentions to look for additional information and take the medication in the next few months. Secondary analyses showed that behavioral intentions were related to knowledge of tamoxifen and attitude toward the medication only for women who were reporting low levels of anxiety. Overall, the findings suggest that anxiety about breast cancer may motivate interest in tamoxifen and not necessarily through affecting knowledge or attitudes., (Copyright © 2012 Elsevier Ltd. All rights reserved.)

Background: Online risk calculators offer different levels of precision in their risk estimates. People interpret numbers in varying ways depending on how they are presented, and we do not know how the number of decimal places displayed might influence perceptions of risk estimates., Objective: The objective of our study was to determine whether precision (ie, number of decimals) in risk estimates offered by an online risk calculator influences users' ratings of (1) how believable the estimate is, (2) risk magnitude (ie, how large or small the risk feels to them), and (3) how well they can recall the risk estimate after a brief delay., Methods: We developed two mock risk calculator websites that offered hypothetical percentage estimates of participants' lifetime risk of kidney cancer. Participants were randomly assigned to a condition where the risk estimate value rose with increasing precision (2, 2.1, 2.13, 2.133) or the risk estimate value fell with increasing precision (2, 1.9, 1.87, 1.867). Within each group, participants were randomly assigned one of the four numbers as their first risk estimate, and later received one of the remaining three as a comparison., Results: Participants who completed the experiment (N = 3422) were a demographically diverse online sample, approximately representative of the US adult population on age, gender, and race. Participants whose risk estimates had no decimal places gave the highest ratings of believability (F(3,3384) = 2.94, P = .03) and the lowest ratings of risk magnitude (F(3,3384) = 4.70, P = .003). Compared to estimates with decimal places, integer estimates were judged as highly believable by 7%-10% more participants (χ(2) (3) =17.8, P < .001). When comparing two risk estimates with different levels of precision, large majorities of participants reported that the numbers seemed equivalent across all measures. Both exact and approximate recall were highest for estimates with zero decimals. Odds ratios (OR) for correct approximate recall (defined as being within 50% of the original estimate) were, for one decimal place, OR = 0.65 (95% CI 0.49-0.86), for two decimal places, OR = 0.70 (95% CI 0.53-0.94), and for three decimal places, 0.61 (95% CI 0.45-0.81). Exact recall showed a similar pattern, with larger effects., Conclusions: There are subtle but measurable differences in how people interpret risk estimates of varying precision. Adding decimal places in risk calculators offers little to no benefit and some cost. Rounding to the nearest integer is likely preferable for communicating risk estimates via risk calculators so that they might be remembered correctly and judged as believable.

Background: Online tools such as Adjuvant! provide tailored estimates of the possible outcomes of adjuvant therapy options available to breast cancer patients. The graphical format typically displays 4 outcomes simultaneously: survival, mortality due to cancer, other-cause mortality, and incremental survival due to adjuvant treatment., Objective: To test whether simpler formats that present only baseline and incremental survival would improve comprehension of the relevant risk statistics and/or affect treatment intentions., Design: . Randomized experimental manipulation of risk graphics shown included in Internet-administered survey vignettes about adjuvant therapy decisions for breast cancer patients with ER + tumors., Participants: Demographically diverse, stratified random samples of women ages 40 to 74 y recruited from an Internet research panel., Intervention: Participants were randomized to view either pictographs (icon arrays) that displayed all 4 possible outcomes or pictographs that showed only survival outcomes., Measurements: Comprehension of key statistics, task completion times, graph evaluation ratings, and perceived interest in adjuvant chemotherapy., Results: In the primary study (N = 832), participants who viewed survival-only pictographs had better accuracy when reporting the total chance of survival with both chemotherapy and hormonal therapy (63% v. 50%, P < 0.001), higher graph evaluation ratings (x = 7.98 v. 7.67, P = 0.04), and less interest in adding chemotherapy to hormonal therapy (43% v. 50%, P = 0.04; adjusted odds ratio [OR] = 0.68, P = 0.008). A replication study (N = 714) confirmed that participants who viewed survival-only graphs had higher graph evaluation ratings (x = 8.06 v. 7.72, P = 0.04) and reduced interest in chemotherapy (OR=0.67,P=0.03)., Limitations: Studies used general public samples; actual patients may process risk information differently., Conclusions: Taking a ''less is more'' approach by omitting redundant mortality outcome statistics can be an effective method of risk communication and may be preferable when using visual formats such as pictographs.

Background: Patient involvement is required before patients' preferences can be reflected in the medical care they receive. Furthermore, patients are a vital link between physicians' assessments of patients' needs and actual implementation of appropriate care. Yet no study has specifically examined how and when a representative sample of patients considered, discussed, and made medical decisions., Objective: To identify decision prevalence and decision-making processes regarding 1) initiation of prescription medications for hypertension, hypercholesterolemia, or depression; 2) screening tests for colorectal, breast, or prostate cancer; and 3) surgeries for knee or hip replacement, cataracts, or lower back pain., Design: Computer-assisted telephone interview survey., Setting: Nationally representative sample of US adults in households with telephones., Participants: 3010 English-speaking adults age 40 and older identified using a stratified random sample of telephone numbers., Measurements: Estimated prevalence of medical decisions, defined as the patient having initiated medications, been screened, or had surgery within the past 2 years or having discussed these actions with a health care provider during the same interval, as well as decision-specific data regarding patient knowledge, attitudes and patient-provider interactions., Results: 82.2% of the target population reported making at least 1 medical decision in the preceding 2 years. The proportion of decisions resulting in patient action varied dramatically both across decision type (medications [61%] v. screening [83%] v. surgery [44%]; P < 0.001), and within each category (e.g., blood pressure medications [76%] v. cholesterol medications [55%] vs. depression medications [48%]; P < 0.001). Respondents reported making more decisions if they had a primary care provider or poorer health status and fewer decisions if they had lower education, were male, or were under age 50. Limitations. Retrospective self-reports may incorporate recall biases., Conclusions: Medical decisions with significant life-saving, quality of life, and cost implications are a pervasive part of life for most US adults. The DECISIONS dataset provides a rich research environment for exploring factors influencing when and how patients make common medical decisions.

Background: Patients should understand the risks and benefits of cancer screening in order to make informed screening decisions., Objectives: To evaluate the extent of informed decision making in patient-provider discussions for colorectal (CRC), breast (BrCa), and prostate (PCa) cancer screening., Setting: National sample of US adults identified by random-digit dialing., Design: Cross-sectional survey conducted between November 2006 and May 2007., Participants: English-speaking US adults aged 50 y and older who had discussed cancer screening with a health care provider within the previous 2 y., Measurements: Cancer screening survey modules that asked about demographic characteristics, cancer knowledge, the importance of various sources of information, and self-reported cancer screening decision-making processes., Results: Overall, 1082 participants completed 1 or more of the 3 cancer modules. Although participants generally considered themselves well informed about screening tests, half or more could not correctly answer even 1 open-ended knowledge question for any given module. Participants consistently overestimated risks for being diagnosed with and dying from each cancer and overestimated the positive predictive values of prostate-specific antigen tests and mammography. Providers were the most highly rated information source, usually initiated screening discussions (64%-84%), and often recommended screening (73%-90%). However, participants reported that providers elicited their screening preferences in only 31% (CRC women) to 57% (PCa) of discussions. Although more than 90% of the discussions addressed the pros of screening, only 19% (BrCa) to 30% (PCa) addressed the cons of screening., Limitations: Recall bias is possible because screening process reports were not independently validated., Conclusions: Cancer screening decisions reported by patients who discussed screening with their health care providers consistently failed to meet criteria for being informed. Given the high ratings for provider information and frequent recommendations for screening, providers have important opportunities to ensure that informed decision making occurs for cancer screening decisions.

Background: Racial/ethnic differences in shared decision making about cardiovascular risk-reduction therapy could affect health disparities., Objective: To investigate whether patient race/ethnicity is associated with experiences discussing cardiovascular risk-reduction therapy with health care providers., Setting: National sample of US adults identified by random-digit dialing., Design: Cross-sectional survey conducted in November 2006 to May 2007., Participants: Among participants in the National Survey of Medical Decisions (DECISIONS), a nationally representative sample of English-speaking US adults aged 40 and older, the authors analyzed respondents who reported discussing hyperlipidemia or hypertension medications with a health care provider in the previous 2 years., Measurements: In multivariate linear and logistic regressions adjusting for age, gender, income, insurance status, perceived health, and current therapy, they assessed the relation between race/ethnicity (black/Hispanic v. white) and decision making: knowledge, discussion of pros and cons of therapy, discussion of patient preference, who made the final decision, preferred involvement, and confidence in the decision., Results: Of respondents who discussed high cholesterol (N = 738) or hypertension (N = 745) medications, 88% were white, 9% black, and 4% Hispanic. Minorities had lower knowledge scores than whites for hyperlipidemia (42% v. 52%, difference -10% [95% confidence interval (CI): 15, -5], P < 0.001), but not for hypertension. For hyperlipidemia, minorities were more likely than whites to report that the health care provider made the final decision for treatment (31.7% v. 12.3% whites, difference 19.4% [95% CI: 6.9, 33.1%], P < 0.01); this was not true for hypertension., Limitations: Possible limitations include the small percentage of minorities in the sample and potential recall bias., Conclusions: Minorities considering hyperlipidemia therapy may be less informed about and less involved in the final decision-making process.

Objective: We sought to estimate what proportion of adults plan to stop cancer screening tests among adults who recently considered screening and to explore factors associated with these screening plans., Design: Telephone Survey, Participants: A total of 1,237 participants aged 50 and older who reported having made one or more cancer screening decisions in the past 2 years completed 1,454 cancer screening modules for breast, prostate and colorectal screening., Main Results: Of all module respondents, 9.8% reported plans to stop screening, 12.6% for breast, 6.0 % for prostate and 9.5% for colon cancer. We found no statistically significant differences in plans to stop for those ages >or=70 (8.2%) compared to those ages 50 to 69 (10.2%) (p = 0.14.) Black respondents were less likely to report plans to stop than white respondents (OR = 0.32, 95% CI 0.12, 0.87). Participation in the decision-making process was associated with plans to stop screening; those who reported they made the final decision about screening (OR 5.9, 95% CI 1.4, 24.7) or made the decision with the health care provider (OR 4.1, 95% CI 1.0, 16.8) were more likely to have plans to stop screening compared to respondents who reported that their health care provider made the final decision., Conclusions: Plans to stop screening were uncommon among participants who had recently faced a screening decision. Given the recent US Preventive Services Task Force recommendations limiting routine cancer screening for older adults, additional efforts to educate adults about the potential risks and benefits of screening may be warranted.

Background: Basic numeracy skills are necessary before patients can understand the risks of medical treatments. Previous research has used objective measures, similar to mathematics tests, to evaluate numeracy., Objectives: To design a subjective measure (i.e., self-assessment) of quantitative ability that distinguishes low- and high-numerate individuals yet is less aversive, quicker to administer, and more usable for telephone and Internet surveys than existing numeracy measures., Research Design: Paper-and-pencil questionnaires., Subjects: The general public (N = 703) surveyed at 2 hospitals., Measures: Forty-nine subjective numeracy questions were compared to measures of objective numeracy., Results: An 8-item measure, the Subjective Numeracy Scale (SNS), was developed through several rounds of testing. Four items measure people's beliefs about their skill in performing various mathematical operations, and 4 measure people's preferences regarding the presentation of numerical information. The SNS was significantly correlated with Lipkus and others' objective numeracy scale (correlations: 0.63-0.68) yet was completed in less time (24 s/item v. 31 s/item, P < 0.05) and was perceived as less stressful (1.62 v. 2.69, P < 0.01) and less frustrating (1.92 v. 2.88, P < 0.01). Fifty percent of participants who completed the SNS volunteered to participate in another study, whereas only 8% of those who completed the Lipkus and others scale similarly volunteered (odds ratio = 11.00, 95% confidence interval = 2.14-56.65)., Conclusions: The SNS correlates well with mathematical test measures of objective numeracy but can be administered in less time and with less burden. In addition, it is much more likely to leave participants willing to participate in additional research and shows much lower rates of missing or incomplete data.

Objective: Person tradeoff (PTO) elicitations assess people's values for health states by asking them to compare the value of treatment programs. For example, people might be asked how many patients need to be cured of health condition X to equal the benefit of curing 100 people of condition Y. However, when faced with PTO elicitations, people frequently refuse to make quantifiable tradeoffs, exhibiting 2 kinds of refusals: 1) They say that 2 treatment programs have equal value, that curing 100 of X is just as good as curing 100 of Y, even if X is a less serious condition than Y, or 2) they say that the 2 programs are incomparable, that millions of people need to be cured of X to be as good as curing 100 of Y. The authors explore whether people would be more willing to make tradeoffs if the focus was changed from trading off groups of patients to choosing the best decision or evaluating treatment benefits., Design: . Two randomized trials used diverse samples (N=2400) via the Internet to test for the effect of perspective on refusal rates. The authors predicted that perspectives that removed people from decision-making roles would increase their willingness make tradeoffs., Results: Contrary to expectations, refusal rates increased when people were removed from decision-making roles. In fact, the more pressure put on people to make a decision, the less likely they were to refuse to make tradeoffs., Conclusion: To reduce PTO refusals, it is best to adopt a decision-maker perspective.

Choices of health care providers can become inconsistent when people lack sufficient context to assess the value of available information. In a series of surveys, general population samples were randomized to read descriptions of either 2 possible health care providers or a single provider. Some information about providers was easy to consider (e.g., travel time), but some was difficult to interpret without additional context (e.g., success rates). Ratings of the described health care providers varied significantly by whether options were evaluated independently or concurrently. For example, one fertility clinic (33% success rate, 15 min away) was rated higher than a 2nd (40% success rate, 45 min away) when each clinic was considered separately (7.1 v. 6.2, P = 0.046), but preferences reversed in joint evaluation (5.9 v. 6.7, P = 0.051). The results suggest that clinicians and developers of patient information materials alike should consider information evaluability when deciding how to present health care options to patients.