Christina Lachance

Informational content, literacy demands, and usability of websites offering health-related genetic tests directly to consumers

Purpose: As direct-to-consumer genetic testing becomes more available, a diverse group of consumers, including those with limited health literacy, may consider testing. In light of concerns raised about direct-to-consumer genetic testing, this study sought to critically examine whether the informational content, literacy demands, and usability of health-related direct-to-consumer websites met existing recommendations.Methods: A content analysis was performed on 29 health-related direct-to-consumer websites. Two coders independently evaluated each website for informational content (e.g., benefits, limitations), literacy demands (e.g., reading level), and usability (e.g., ease of navigation).Results: Most sites presented health conditions and some markers for which they tested, benefits of testing, a description of the testing process, and their privacy policy. Fewer cited scientific literature, explained test limitations, or provided an opportunity to consult a health professional. Key informational content was difficult to locate on most sites. Few sites gave sample disease risk estimates or used common language and explained technical terms consistently. Average reading level was grade 15.Conclusion: The quality of informational content, literacy demands, and usability across health-related direct-to-consumer websites varied widely. Many users would struggle to find and understand the important information. For consumers to better understand the content on these sites and evaluate the meaning of the tests for their health, sites should lower the demands placed on users by distilling and prioritizing the key informational content while simultaneously attending to the reading level and usability elements. In the absence of regulation compelling such changes, government agencies or professional organizations may need to increase consumer and provider awareness of these issues.

Age Differences in Genetic Knowledge, Health Literacy and Causal Beliefs for Health Conditions

Objectives: This study examined the levels of genetic knowledge, health literacy and beliefs about causation of health conditions among individuals in different age groups. Methods: Individuals (n = 971) recruited through 8 community health centers in Suffolk County, New York, completed a one-time survey. Results: Levels of genetic knowledge were lower among individuals in older age groups (26–35, p = 0.011; 36–49, p = 0.002; 50 years and older, p<0.001) compared to those in the youngest age group (18–25). Participants in the oldest age group also had lower health literacy than those in the youngest group (p <0.001). Those in the oldest group were more likely to endorse genetic (OR = 1.87, p = 0.008) and less likely to endorse behavioral factors like diet, exercise and smoking (OR = 0.55, p = 0.010) as causes of a person’s body weight than those in the youngest group. Higher levels of genetic knowledge were associated with higher likelihood of behavioral attribution for body weight (OR = 1.25, p <0.001). Conclusions: Providing additional information that compensates for their lower genetic knowledge may help individuals in older age groups benefit from rapidly emerging genetic health information more fully. Increasing the levels of genetic knowledge about common complex diseases may help motivate individuals to engage in health promoting behaviors to maintain healthy weight through increases in behavioral causal attributions.

Presence relates to distinct outcomes in two virtual environments employing different learning modalities.

Presence in virtual learning environments (VLEs) has been associated with a number of outcome factors related to a users ability and motivation to learn. The extant but relatively small body of research suggests that a high level of presence is related to better performance on learning outcomes in VLEs. Different configurations of form and content variables such as those associated with active (self-driven, interactive activities) versus didactic (reading or lecture) learning may, however, influence how presence operates and on what content it operates. We compared the influence of presence between two types of immersive VLEs (i.e., active versus didactic techniques) on comprehension and engagement-related outcomes. The findings revealed that the active VLE promoted greater presence. Although we found no relationship between presence and learning comprehension outcomes for either virtual environment, presence was related to information engagement variables in the didactic immersive VLE but not the active environment. Results demonstrate that presence is not uniformly elicited or effective across immersive VLEs. Educational delivery mode and environment complexity may influence the impact of presence on engagement.

Educating Underserved Latino Communities about Family Health History Using Lay Health Advisors

Background: Family health history (FHH) is a tool used to inform individuals about inherited disease risk. Due to their disproportionate morbidity and mortality from some common chronic diseases, U.S. Latinos are an important audience for FHH information. This study examined the effects of a culturally-tailored intervention led by lay health advisors (LHAs) in delivering information about FHH on participants’ intentions, self-efficacy, and conceptual knowledge. Methods: 474 Spanish-speaking Latino participants were enrolled in the study. Individuals in the intervention group participated in a single group educational session using discussion and interactive activities to build skills for discussing FHH with one’s family members and doctor, while individuals in the comparison group had a brochure read aloud to them. Pre- and post-test questionnaires were verbally administered. Results: Primary dependent variables were intentions and self-efficacy to discuss FHH with family members and doctors; these increased in both groups. Multivariate analyses demonstrated that the intervention led to a significantly greater increase in self-efficacy to discuss FHH with family members (p = 0.03). LHA participants were also more than twice as likely (OR = 2.6, 95% CI = 1.3–5.0) to correctly understand the purpose of a FHH and found FHH information more useful (p < 0.0001). Conclusions: A communication intervention delivered by LHAs shows promise as an effective means of educating underserved Spanish-speaking Latinos about the importance of FHH for disease prevention. Such community-based approaches can help to close knowledge and skills gaps about FHH and increase confidence in using this information to improve the health of those most at risk.

Issues in the Assessment of “Race” Among Latinos: Implications for Research and Policy

Measurement of race and ethnicity is integral to assessing and addressing health disparities experienced by minorities. However, the unique experiences of Latinos related to race and the discordance between understandings of race among Latinos and the predominant U.S. conceptualizations of this construct impact how Latinos respond to measurement approaches. As a result, data collection methodologies often yield ambiguous responses that reveal little about this population. This article examines Latinos’ racial responding, and how this relates to their experiences and understanding of their racial identity. We recommend the use of a combined race and ethnicity question and open-ended race and ethnicity questions, when feasible, which will likely yield more meaningful data that can be used to address this populations’ health needs.

Testing Communication Strategies to Convey Genomic Concepts Using Virtual Reality Technology

Health professionals need to be able to communicate information about genomic susceptibility in understandable and usable ways, but substantial challenges are involved. We developed four learning modules that varied along two factors: (1) learning mode (active learning vs. didactic learning) and (2) metaphor (risk elevator vs. bridge) and tested them using a 2 × 2 between-subjects, repeated measures design. The study used an innovative virtual reality technology experimental platform; four virtual worlds were designed to convey the concept that genetic and behavioral factors interact to affect common disease risk. The primary outcome was comprehension (recall, transfer). Study participants were 42 undergraduates aged 19–23. The results indicated that the elevator metaphor better supported learning of the concept than the bridge metaphor. Mean transfer score was significantly higher for the elevator metaphor (p < 0.05). Mean change in recall was significantly higher for didactic learning than active learning (p < 0.05). Mean ratings for variables posited to be associated with better learning (e.g., motivation), however, were generally higher for the active learning worlds. The results suggested that active learning might not always be more effective than didactic learning in increasing comprehension of health information. The findings also indicated that less complex metaphors might convey abstract concepts more effectively.

Effects of racial and ethnic group and health literacy on responses to genomic risk information in a medically underserved population

OBJECTIVE Few studies have examined how individuals respond to genomic risk information for common, chronic diseases. This randomized study examined differences in responses by type of genomic information (genetic test/family history) and disease condition (diabetes/heart disease), and by race/ethnicity in a medically underserved population. METHODS 1,057 English-speaking adults completed a survey containing 1 of 4 vignettes (2-by-2 randomized design). Differences in dependent variables (i.e., interest in receiving genomic assessment, discussing with doctor or family, changing health habits) by experimental condition and race/ethnicity were examined using chi-squared tests and multivariable regression analysis. RESULTS No significant differences were found in dependent variables by type of genomic information or disease condition. In multivariable models, Hispanics were more interested in receiving a genomic assessment than Whites (OR = 1.93; p < .0001); respondents with marginal (OR = 1.54; p = .005) or limited (OR = 1.85; p = .009) health literacy had greater interest than those with adequate health literacy. Blacks (OR = 1.78; p = .001) and Hispanics (OR = 1.85; p = .001) had greater interest in discussing information with family than Whites. Non-Hispanic Blacks (OR = 1.45; p = .04) had greater interest in discussing genomic information with a doctor than Whites. Blacks (β = -0.41; p < .001) and Hispanics (β = -0.25; p = .033) intended to change fewer health habits than Whites; health literacy was negatively associated with number of health habits participants intended to change. CONCLUSIONS Findings suggest that race/ethnicity may affect responses to genomic risk information. Additional research could examine how cognitive representations of this information differ across racial/ethnic groups. Health literacy is also critical to consider in developing approaches to communicating genomic information.

Testing the effects of educational strategies on comprehension of a genomic concept using virtual reality technology.

OBJECTIVE Applying genetic susceptibility information to improve health will likely require educating patients about abstract concepts, for which there is little existing research. This experimental study examined the effect of learning mode on comprehension of a genomic concept. METHODS 156 individuals aged 18-40 without specialized knowledge were randomly assigned to either a virtual reality active learning or didactic learning condition. The outcome was comprehension (recall, transfer, mental models). RESULTS Change in recall was greater for didactic learning than for active learning (p<0.001). Mean transfer and change in mental models were also higher for didactic learning (p<0.0001 and p<0.05, respectively). Believability was higher for didactic learning (p<0.05), while ratings for motivation (p<0.05), interest (p<0.0001), and enjoyment (p<0.0001) were higher for active learning, but these variables did not mediate the association between learning mode and comprehension. CONCLUSION These results show that learning mode affects comprehension, but additional research is needed regarding how and in what contexts different approaches are best for educating patients about abstract concepts. PRACTICE IMPLICATIONS Didactic, interpersonal health education approaches may be more effective than interactive games in educating patients about abstract, unfamiliar concepts. These findings indicate the importance of traditional health education approaches in emerging areas like genomics.

Self-reported segregation experience throughout the life course and its association with adequate health literacy

Residential segregation has been shown to be associated with health outcomes and health care utilization. We examined the association between racial composition of five physical environments throughout the life course and adequate health literacy among 836 community health center patients in Suffolk County, NY. Respondents who attended a mostly White junior high school or currently lived in a mostly White neighborhood were more likely to have adequate health literacy compared to those educated or living in predominantly minority or diverse environments. This association was independent of the respondents race, ethnicity, age, education, and country of birth.

Relationship Between Self-Reported Racial Composition of High School and Health Literacy Among Community Health Center Patients

Intervention and policy approaches targeting the societal factors that affect health literacy (e.g., educational systems) could have promise to improve health outcomes, but little research has investigated these factors. This study examined the associations between self-reported racial composition of prior educational and neighborhood contexts and health literacy among 1,061 English- and Spanish-speaking adult community health center patients. The authors found that self-reported racial composition of high school was a significant predictor of health literacy among those who received schooling in the United States, controlling for race/ethnicity, education, age, country of birth, and survey language. Black and Hispanic patients had significantly lower health literacy than White patients within educational strata among those schooled in the United States. The findings revealed substantial disparities in health literacy. Self-reported racial composition of school context was a significant predictor of health literacy. Transdisciplinary, multilevel intervention approaches are likely to be needed to address the health literacy needs of this population.