Melody S. Goodman

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.

Perceived barriers to mammography among underserved women in a Breast Health Center Outreach Program

BACKGROUND To investigate perceived barriers to mammography among underserved women, we asked participants in the Siteman Cancer Center Mammography Outreach Registry-developed in 2006 to evaluate mobile mammographys effectiveness among the underserved-why they believed women did not get mammograms. METHODS The responses of approximately 9,000 registrants were analyzed using multivariable logistic regression. We report adjusted odds ratios (OR) and 95% confidence intervals (CI) significant at 2-tailed P values less than .05. RESULTS Fears of cost (40%), mammogram-related pain (13%), and bad news (13%) were the most commonly reported barriers. Having insurance was associated with not perceiving cost as a barrier (OR .44, 95% CI .40 to .49), but with perceiving fear of both mammogram-related pain (OR 1.39, 95% CI 1.21 to 1.60) and receiving bad news (OR 1.38, 95% CI 1.19 to 1.60) as barriers. CONCLUSION Despite free services, underserved women continue to report experiential and psychological obstacles to mammography, suggesting the need for more targeted education and outreach in this population.

The impact of teach-back on comprehension of discharge instructions and satisfaction among emergency patients with limited health literacy: A randomized, controlled study

Abstract Objective Recommended as a ‘universal precaution’ for improving provider–patient communication, teach-back has a limited evidence base. Discharge from the emergency department (ED) to home is an important high-risk transition of care with potential for miscommunication of critical information. We examined whether teach-back improves: comprehension and perceived comprehension of discharge instructions and satisfaction among patients with limited health literacy (LHL) in the ED. Methods We performed a randomized, controlled study among adult patients with LHL, randomized to teach-back or standard discharge instructions. Patients completed an audio-recorded structured interview evaluating comprehension and perceived comprehension of (1) diagnosis, (2) ED course, (3) post-ED care, and (4) reasons to return and satisfaction using four Consumer Assessment of Healthcare Providers and Systems questions. Concordance with the medical record was rated using a five-level scale. We analyzed differences between groups using multivariable ordinal logistic regression. Results Patients randomized to receive teach-back had higher comprehension of post-ED care areas: post-ED medication (P < 0.02), self-care (P < 0.03), and follow-up instructions (P < 0.0001), but no change in patient satisfaction or perceived comprehension. Conclusion Teach-back appears to improve comprehension of post-ED care instructions but not satisfaction or perceived comprehension. Our data from a randomized, controlled study support the effectiveness of teach-back in a busy clinical setting. Further research is needed to test the utility and feasibility of teach-back for routine use including its impacts on distal outcomes.

Preferences for return of incidental findings from genome sequencing among women diagnosed with breast cancer at a young age.

While experts have made recommendations, information is needed regarding what genome sequencing results patients would want returned. We investigated what results women diagnosed with breast cancer at a young age would want returned and why. We conducted 60 semi‐structured, in‐person individual interviews with women diagnosed with breast cancer at age 40 or younger. We examined interest in six types of incidental findings and reasons for interest or disinterest in each type. Two coders independently coded interview transcripts; analysis was conducted using NVivo 10. Most participants were at least somewhat interested in all six result types, but strongest interest was in actionable results (i.e. variants affecting risk of a preventable or treatable disease and treatment response). Reasons for interest varied between different result types. Some participants were not interested or ambivalent about results not seen as currently actionable. Participants wanted to be able to choose what results are returned. Participants distinguished between types of individual genome sequencing results, with different reasons for wanting different types of information. The findings suggest that a focus on actionable results can be a common ground for all stakeholders in developing a policy for returning individual genome sequencing results.

Effect of cognitive dysfunction on the relationship between age and health literacy.

OBJECTIVE Age is generally an inverse predictor of health literacy. However, the role of cognitive dysfunction among older adults in this relationship is not understood. METHODS We conducted a cross-sectional survey of 446 adult patients in a large urban academic level one trauma center, assessing health literacy and cognitive dysfunction. RESULTS Removing older patients (60 years of age and older) who screened positive for cognitive dysfunction attenuated the relationship between age and health literacy (r=-0.16, p=0.001 vs. r=-0.35, p<0.0001). Older patients screening positive for cognitive dysfunction had significantly lower health literacy than older patients screening negative and patients less than 60 years; health literacy scores did not generally differ significantly between the latter groups. CONCLUSION Much of the relationship between age and health literacy was driven by cognitive dysfunction among a subset of older adults. PRACTICE IMPLICATIONS Our findings suggest that older patients with cognitive dysfunction have the greatest need for health literacy interventions.

Racism at the intersections: Gender and socioeconomic differences in the experience of racism among African Americans.

Several studies investigating the health effects of racism have reported gender and socioeconomic differences in exposures to racism, with women typically reporting lower frequencies, and individuals with greater resources reporting higher frequencies. This study used diverse measures of socioeconomic position and multiple measures and methods to assess experienced racism. Socioeconomic position included education and financial and employment status. Quantitative racism measures assessed individual experiences with day-to-day and with major lifetime incidents and perceptions of the extent to which African Americans as a group experience racism. A brief qualitative question asked respondents to describe a racist incident that stood out in recent memory. Participants comprised a probability sample of N = 144 African American adults aged 19 to 87 residing in New York City. Results suggested that women reported fewer lifetime incidents but did not differ from men on everyday racism. These differences appear to be partly because of scale content. Socioeconomic position as measured by years of education was positively associated with reported racism in the total sample but differently patterned across gender; subjective social status showed a negative association. Qualitative responses describing memorable incidents fell into 5 key categories: resources/opportunity structures, criminal profiling, racial aggression/assault, interpersonal incivilities, and stereotyping. In these narratives, men were more likely to offer accounts involving criminal profiling, and women encountered incivilities more often. The findings highlight the need for closer attention to the intersection of gender and socioeconomic factors in investigations of the health effects of racism.

Cross-Sectional and Longitudinal Effects of Racism on Mental Health Among Residents of Black Neighborhoods in New York City

OBJECTIVES We investigated the impact of reported racism on the mental health of African Americans at cross-sectional time points and longitudinally, over the course of 1 year. METHODS The Black Linking Inequality, Feelings, and the Environment (LIFE) Study recruited Black residents (n = 144) from a probability sample of 2 predominantly Black New York City neighborhoods during December 2011 to June 2013. Respondents completed self-report surveys, including multiple measures of racism. We conducted assessments at baseline, 2-month follow-up, and 1-year follow-up. Weighted multivariate linear regression models assessed changes in racism and health over time. RESULTS Cross-sectional results varied by time point and by outcome, with only some measures associated with distress, and effects were stronger for poor mental health days than for depression. Individuals who denied thinking about their race fared worst. Longitudinally, increasing frequencies of racism predicted worse mental health across all 3 outcomes. CONCLUSIONS These results support theories of racism as a health-defeating stressor and are among the few that show temporal associations with health.

Effect of Health Literacy on Decision-Making Preferences among Medically Underserved Patients:

Introduction. Participation in the decision-making process and health literacy may both affect health outcomes; data on how these factors are related among diverse groups are limited. This study examined the relationship between health literacy and decision-making preferences in a medically underserved population. Methods. We analyzed a sample of 576 primary care patients. Multivariable logistic regression was used to examine the independent association of health literacy (measured by the Rapid Estimate of Adult Literacy in Medicine–Revised) and patients’ decision-making preferences (physician directed or patient involved), controlling for age, race/ethnicity, and gender. We tested whether having a regular doctor modified this association. Results. Adequate health literacy (odds ratio [OR] = 1.7; P = 0.009) was significantly associated with preferring patient-involved decision making, controlling for age, race/ethnicity, and gender. Having a regular doctor did not modify this relationship. Males were significantly less likely to prefer patient-involved decision making (OR = 0.65; P = 0.024). Discussion. Findings suggest health literacy affects decision-making preferences in medically underserved patients. More research is needed on how factors, such as patient knowledge or confidence, may influence decision-making preferences, particularly for those with limited health literacy.

Relationships Between Health Literacy and Genomics-Related Knowledge, Self-Efficacy, Perceived Importance, and Communication in a Medically Underserved Population

The increasing importance of genomic information in clinical care heightens the need to examine how individuals understand, value, and communicate about this information. Based on a conceptual framework of genomics-related health literacy, we examined whether health literacy was related to knowledge, self-efficacy, and perceived importance of genetics and family health history (FHH) and communication about FHH in a medically underserved population. The analytic sample was composed of 624 patients at a primary care clinic in a large urban hospital. About half of the participants (47%) had limited health literacy; 55% had no education beyond high school, and 58% were Black. In multivariable models, limited health literacy was associated with lower genetic knowledge (β = −0.55, SE = 0.10, p < .0001), lower awareness of FHH (odds ratio [OR] = 0.50, 95% confidence interval [CI; 0.28, 0.90], p = .020), and greater perceived importance of genetic information (OR = 1.95, 95% CI [1.27, 3.00], p = .0022) but lower perceived importance of FHH information (OR = 0.47, 95% CI [0.26, 0.86], p = .013) and more frequent communication with a doctor about FHH (OR = 2.02, 95% CI [1.27, 3.23], p = .0032). The findings highlight the importance of considering domains of genomics-related health literacy (e.g., knowledge, oral literacy) in developing educational strategies for genomic information. Health literacy research is essential to avoid increasing disparities in information and health outcomes as genomic information reaches more patients.

Quantitative assessment of participant knowledge and evaluation of participant satisfaction in the CARES training program

Background: The purpose of the Community Alliance for Research Empowering Social change (CARES) training program was to (1) train community members on evidence-based public health, (2) increase their scientific literacy, and (3) develop the infrastructure for community-based participatory research (CBPR).Objectives: We assessed participant knowledge and evaluated participant satisfaction of the CARES training program to identify learning needs, obtain valuable feedback about the training, and ensure learning objectives were met through mutually beneficial CBPR approaches.Methods: A baseline assessment was administered before the first training session and a follow-up assessment and evaluation was administered after the final training session. At each training session a pretest was administered before the session and a posttest and evaluation were administered at the end of the session. After training session six, a mid-training evaluation was administered. We analyze results from quantitative questions on the assessments, pre- and post-tests, and evaluations.Results: CARES fellows knowledge increased at follow-up (75% of questions were answered correctly on average) compared with baseline (38% of questions were answered correctly on average) assessment; post-test scores were higher than pre-test scores in 9 out of 11 sessions. Fellows enjoyed the training and rated all sessions well on the evaluations.Conclusions: The CARES fellows training program was successful in participant satisfaction and increasing community knowledge of public health, CBPR, and research methodology. Engaging and training community members in evidence-based public health research can develop an infrastructure for community-academic research partnerships.