Purpose: Over the past 10 years, numerous research studies have demonstrated that icon arrays (also called "pictographs") are an effective method of communicating risk statistics, especially to less numerate and less graphically literate people. Yet almost no research has studied which icons should be used in these arrays. We sought to assess whether icon type affects perceived likelihood, risk recall, and/or preferences.   

Methods: We surveyed 1504 people age 35 to 75 from an online panel and had them complete a cardiovascular risk calculator based on Framingham data using their actual age, weight, and other health data. Participants received their risk calculator output in an icon array (as well as numerical form). Icon type was randomly varied between participants from among 6 types: large rectangular blocks (often used in past research), filled ovals, male/female bathroom icons (gender matched to participant), smiley/frowny faces, a head and shoulders grey outline figure, or actual head and shoulder photographs. In this last condition, the photographs showed multiple faces of people of different races (gender matched). Events were shown by blue versus grey icons (blue vs. grey shirt color in the photo condition). We then measured perceived likelihood, perceived risk magnitude, gist recall, and preferences regarding the icon arrays. In addition, we assessed both subjective numeracy and an abbreviated form of graphical literacy.   

Results: Correlations between participants’ perceived likelihood of heart disease or stroke and the displayed risk information varied from a high of 0.30 for ovals to a low of 0.10 for grey outline figures. Similar patterns were observed for perceived risk magnitude. When controlling for risk level, numeracy, and graphical literacy, gist recall was significantly higher when respondents viewed person-like icons (bathroom icons (p<0.01), outline figures (p<0.06), or photos (p<0.02)) versus blocks. Participants who viewed bathroom icons and photos gave higher graph preference ratings than participants viewing blocks.   

Conclusions: Icon type can significantly alter people’s responses to risk information presented in pictographs. While person-like icons resulted in better recall and generally higher preference ratings, ovals resulted in higher correlations between perceived likelihood and the presented risk information. More research is clearly needed before definitive guidance can be provided to risk communicators and decision aid developers regarding which icons are most effective.

Purpose:  To determine how people who differ in numeracy and age perceive risks and report intentions to use a prescribed medication when presented with numeric and/or non-numeric information about the likelihood of side effects.    

Methods:  An internet sample of 1,527 participants was given side-effect information in one of six formats (the list format used in the US, verbal labels recommended in Europe, percentage, frequency, verbal labels plus percentage, verbal labels plus frequency).  They responded to two risk perception questions, one likelihood-to-take-the-drug question on a 7-point scale, and stated the main reason for their likelihood rating.    

Results:  Given non-numeric risk information, 70-80% of participants overestimated risks compared to12-37% in numeric conditions. Non-numeric participants also reported being less likely to take the medication than numeric participants. Those in the US-list condition, in particular, were more likely to state that the rare severe side effect was the main reason for their likelihood rating than other participants who were more likely to state that side effects were neither likely nor severe. Of import, differences between numeric and non-numeric formats were greater for the highly numerate, but were also shown by the less numerate–an unexpected finding based on prior speculation. Age differences existed, with less numerate older adults not showing the same numeric advantage. Providing verbal labels (common, rare) with numeric information attenuated numeracy differences and reduced risk overestimation compared to all other conditions.    

Conclusions:  The US-list format for presenting side effects led to the greatest risk overestimation and focus on severe side effects relative to all other tested formats. The provision of risk in numeric formats compared to non-numeric ones had similar effects across numeracy levels. However, the effect of providing numbers may be more problematic for older less numerate adults, perhaps due to lower comprehension of numbers or number meaning or increased anxiety in the presence of unfamiliar numbers. Overall, this study revealed that providing numeric plus verbal likelihoods for side effects in decision aids and patient medication information is likely to generate more accurate risk perceptions across numeracy and age groups, which in turn may lead to better health outcomes. More research is needed to better understand how less numerate older populations react to the provision of numeric information.

Purpose: Ethical and policy considerations are associated with the research use of residual dried blood spots (DBS) collected as part of nationwide mandatory newborn screening. The objective of this study is to quantify the relative importance of the following considerations to parents' attitudes about the research use of their children's residual DBS: 1) who is conducting the research; 2) whether the child's identity is linked to his/her DBS; and 3) whether consent is sought from parents for the research.

Method: Survey respondents rated the acceptability of 13 hypothetical research scenarios involving the use of DBS samples in which several factors were systematically varied, including: whether university researchers or a drug company would be conducting the research using the DBS; whether their child's identity would be linked to the DBS; and whether the caregivers' consent would be sought before the research began, and if so, whether that consent would be sought only one time for all research involving the DBS or sought for each and every study using their child's DBS. Eligible respondents were 18 or older, fluent in English, and primary caregiver to at least one child under 17 years old born in Indiana.

Result: The sample (N=506) included caregivers 18-60 years old, who were predominantly mothers. Full-profile ratings-based conjoint analysis indicates strong model fit (Pearson's R=.998, p<.001). Consent emerged as the most important factor in caregivers' ratings of acceptability of scenarios presented in the survey (importance score=64.9). Second most important in acceptability ratings was whether their child's identity was linked to the DBS (importance score=19.4), followed by the researcher who would be using their child's DBS (importance score of=14.6). Part-worth utilities show that respondents preferred being asked for their consent for each study in which their child's DBS would be used, that the child's identity not be linked the DBS, and that the researchers be from a university.

Conclusion: This research quantifies the relative importance of factors impacting what caregivers' consider acceptable/unacceptable parameters for using their children's DBS in research. Consent emerged as the most important factor driving attitudes in this study. Entities overseeing the storage of residual DBS, researchers intending to use DBS, as well as policymakers should consider adopting consent protocols.

Purpose:   To compare the impact of a plain language versus a higher reading level decision aid for localized prostate cancer on patients’ knowledge, preference for shared decision making, perceived patient-physician communication, and treatment choice.     

Methods:   1015 men were recruited from 4 VA hospitals, either before or after receiving a prostate biopsy because of suspicion of prostate cancer. Men were randomized to either receive a plain language decision aid (7^th grade reading level) or a higher reading level decision aid (12^th grade reading level). Participants completed measures at three time periods: biopsy (Time 1), immediately before receiving their cancer diagnosis (Time 2), and one week following diagnosis (Time 3). Only those patients with a positive biopsy result indicating localized prostate cancer (PSA<20, Gleason score of 6 or 7) were eligible to complete Time 2 and 3 measures (N = 335).    

Results: Participants receiving the plain language decision aid showed higher knowledge at Time 2 (64% correct vs. 57% correct; F=11.7, p=0.001), were more interested in shared decision making at Time 2 (2.53 vs. 2.35, F=6.37, p<0.02), and were more interested in active surveillance prior to talking with their doctor (Time 2: 43.0% vs. 30.6%, p<0.05) compared with those receiving a higher reading level decision aid. There were no differences between groups in treatment preferences after speaking with their doctor (Time 3) or the treatment they actually received (determined by medical record review).   

Conclusions:   Although developing plain language decision aids is an expensive and time-consuming task, it has significant impact on patients’ initial treatment preferences and key components of the decision making process. Between the time that the patient read the decision aid and when he found out his diagnosis, those with the plain language decision aid were more interested in shared decision making and in less invasive treatments. They also had a more positive perception of the decision aid. These results suggest that using plain language principles in designing decision aids has important implications for medical decision making.

Purpose: An ever-increasing number of genetic tests are clinically available. Typically, disease incidence and severity, as well as the availability of an effective screening test, will culminate in “expert opinion” that testing for a given disorder should be recommended on a population basis, with no incorporation of evidence regarding the preferences of the target population.  We sought to assess the perspective of reproductive-aged women regarding testing for several categories of genetic disorders.

Method: We interviewed women who had given birth to healthy infants within the past year. Sociodemographic information was collected by questionnaire, and preferences (utilities) for potential outcomes of prenatal testing for Down syndrome (DS), Fragile X (FraX), cystic fibrosis (CF), spinal muscular atrophy (SMA), phenylketonuria (PKU) and congenital heart defects (CHD) were elicited using the time trade-off metric. We also assessed attitudes toward screening tests, diagnostic tests and termination for affected pregnancies in the context of each of these conditions.

Result: 95 women aged 21 to 48 years participated, of whom 60% were Caucasian, 23% were Asian, 10% were Latina and 7% were African American. Most of the participants (82%) were college graduates.  Most participants indicated that they would opt to have a screening test for each of these conditions (95-98% depending on the specific test), and the majority also indicated that they would have amniocentesis (64% for PKU to 72% for SMA).  Inclinations regarding pregnancy termination varied substantially by condition: while only 10% of the participants indicated they would choose to terminate a pregnancy for CHD, 41% would be inclined to do so for DS and 62% for SMA.  Utilities for having a child with these conditions ranged from 0.42 for SMA to 0.70 for CHD.

Conclusion: While most women in this cohort would choose to undergo screening for all of the conditions we presented to them, the majority would do so without intent to terminate an affected pregnancy.  Women view treatable disorders (PKU, CHD) as preferable to those associated with intellectual disability (DS, FraX).  Lethal disorders (SMA) or medical disorders with shortened life expectancy (CF) had the lowest utility.  Data on preferences and utilities collected from diverse populations should be incorporated into policy decisions regarding prenatal genetic screening.

Purpose: To determine the relationship between patient literacy level and anxiety, knowledge, preference for shared decision making, perceived patient-physician communication, and treatment choice.

Method: 1015 men undergoing a prostate biopsy were recruited from 4 VA hospitals either before or after receiving their biopsy, as a part of a study examining prostate cancer decision aids. Participants completed measures at 3 timepoints: biopsy (Time 1), immediately before receiving their cancer diagnosis (Time 2), and one week post-diagnosis (Time 3). Only patients with positive biopsy results indicating localized cancer were eligible to complete Time 2 and 3 measures (N=335). Literacy was measured using the Rapid Estimates of Adult Literacy in Medicine (REALM).

Result: 72.6% of participants were classified as having adequate literacy (≥9^th grade reading level), while 27.4% were classified as having inadequate literacy (≤8^th grade reading level). Participants with inadequate literacy had higher levels of anxiety at each timepoint (p’s<0.01) and had marginally lower knowledge at Time 2 (57% correct vs. 62% correct; p=0.09). Participants with inadequate literacy were less interested in shared decision making at Time 1 (2.25 vs. 2.38; p<0.01), but this difference disappeared after they received a decision aid (Times 2 and 3), with their interest in shared decision making increasing over time (M’s = 2.25, 2.42, 2.50). Before meeting with their urologist, participants with inadequate literacy were less interested in active surveillance (23.8% versus 41.8%; p<0.02) and more interested in surgery (55.6% versus 37.5%; p<0.04), compared to those with adequate literacy. There were no differences between groups in treatment preferences after patients had spoken with their urologists (Time 3), nor in the treatment they ultimately received (determined via medical records). Participants’ perception of the quality of patient-physician communication did not differ by literacy level.

Conclusion: These results demonstrate that patient literacy is related to patients’ decision making experiences. Patients with inadequate literacy exhibited higher anxiety, were initially less interested in shared decision making, and were more likely to prefer more invasive treatment. These results suggest that patients with varying literacy levels may experience the decision making process differently. These results highlight the need for decision aids that are written with lower literacy readers in mind and suggest that lower literacy patients may need additional services to help them during the decision making process.