Assessing patient-level knowledge of precision medicine in a community health center setting.

As precision medicine approaches are implemented, cancer treatment decisions have come to require comprehension of genetic tests and their role in risk stratification and treatment options. Acceptance and implementation of precision medicine requires patient understanding of numeracy, genetic literacy, health literacy, and medical trust. Implementing precision medicine in a US federally qualified community health center (FQCHC) setting has received little attention. Using a mixed-methods approach, we sought to identify patient-level factors influencing the understanding of cancer risk and precision medicine among FQCHC patients. We enrolled 26 English-speaking adults aged 40-79 years. Participants enrolled in focus groups and completed surveys to assess patient-level understanding of precision medicine, numeracy, and health literacy. The majority of participants were female (77%) and self-identified as African American (89%). Approximately one-third reported having a high school degree or less. While health literacy was generally high, 42% felt that genes or genetics had little impact on health and most (69%) reported little familiarity with precision medicine. Many participants reported that trust in their providers was extremely or very important when receiving genetic tests. Numeracy levels were moderate, with nearly half reporting some discomfort working with fractions and 38% finding numerical information only occasionally useful. Findings suggest that patients may lack familiarity with precision medicine concepts relevant for understanding cancer treatment decisions. Future educational efforts may help bridge the gap in patient understanding and facilitate equitable opportunities for precision medicine for all patients, including those seeking care from community health centers.

A pilot study of a culturally-appropriate, educational intervention to increase participation in cancer clinical trials among African Americans and Latinos.

AIM: Culturally-appropriate, educational programs are recommended to improve cancer clinical trial participation among African Americans and Latinos. This study investigated the effect of a culturally-appropriate, educational program on knowledge, trust in medical researchers, and intent for clinical trial participation among African Americans and Latinos in Middle Tennessee. METHOD: Trained community health educators delivered a 30-min presentation with video testimonials to 198 participants in 13 town halls. A pre-post survey design was used to evaluate the intervention among 102 participants who completed both pre- and post-surveys one to two weeks after the session. RESULTS: Paired-sample t-test showed significant increases in unadjusted mean scores for knowledge (p < 0.001), trust in medical researchers (p < 0.001), and willingness to participate in clinical trials (p = 0.003) after the town halls in the overall sample. After adjusting for gender and education, all three outcomes remained significant for the overall sample (knowledge: p < 0.001; trust in medical researchers: p < 0.001; willingness: p = 0.001) and for African Americans (knowledge: p < 0.001; trust in medical researchers: p = 0.007; willingness: p = 0.005). However, willingness to participate was no longer significant for Latinos (knowledge: p < 0.001; trust in medical researchers: p = 0.034; willingness: p = 0.084). CONCLUSIONS: The culturally-appropriate, educational program showed promising results for short-term, clinical trial outcomes. Further studies should examine efficacy to improve research participation outcomes.

Formative research to design a culturally-appropriate cancer clinical trial education program to increase participation of African American and Latino communities.

BACKGROUND: Addressing knowledge deficiencies about cancer clinical trials and biospecimen donation can potentially improve participation among racial and ethnic minorities. This paper describes the formative research process used to design a culturally-appropriate cancer clinical trials education program for African American and Latino communities. We characterized community member feedback and its integration into the program. METHODS: We incorporated three engagement approaches into the formative research process to iteratively develop the program: including community-based organization (CBO) leaders as research team members, conducting focus groups and cognitive interviews with community members as reviewers/consultants, and interacting with two community advisory groups. An iterative-deductive approach was used to analyze focus group data. Qualitative data from advisory groups and community members were compiled and used to finalize the program. RESULTS: Focus group themes were: 1) Community Perspectives on Overall Presentation; 2) Community Opinions and Questions on the Content of the Presentation; 3) Culturally Specific Issues to Participation in Cancer Clinical Trials; 4) Barriers to Clinical Trial Participation; and 5) Perspectives of Community Health Educators. Feedback was documented during reviews by scientific experts and community members with suggestions to ensure cultural appropriateness using peripheral, evidential, linguistic, sociocultural strategies, and constituent-involving. The final program consisted of two versions (English and Spanish) of a culturally-appropriate slide presentation with speaker notes and videos representing community member and researcher testimonials. CONCLUSIONS: Incorporating multiple community engagement approaches into formative research processes can facilitate the inclusion of multiple community perspectives and enhance the cultural-appropriateness of the programs designed to promote cancer clinical trial participation among African Americans and Latinos.

Group Versus Individual Educational Sessions With a Promotora and Hispanic/Latina Women's Satisfaction With Care in the Screening Mammography Setting: A Randomized Controlled Trial.

OBJECTIVE. We studied Hispanic/Latina women's satisfaction with care after receiving group or individual educational sessions (vs standard of care) with a promotora before screening mammography. A promotora is a culturally appropriate community health worker for the Hispanic/Latino community. Promotoras have been shown to increase screening mammography rates and follow-up of abnormal mammograms in this population. However, a promotora's impact on elements of patient care and patient satisfaction remains poorly described. MATERIALS AND METHODS. Hispanic/Latina women 40-64 years old were randomized to one of three groups: the control group (standard-of-care well woman screening), an individual educational session with a promotora followed by well woman screening with access to the promotora, or a group educational session followed by well woman screening with access to the promotora. Access to the promotora included the opportunity to ask questions during well woman screening and a follow-up telephone call to discuss results and follow-up if necessary. Participants completed a premammography survey that assessed demographics and health literacy and a postmammography survey that assessed satisfaction with care, interpersonal processes of care, and satisfaction with the promotora. We used multivariable linear regression models and two-sample t tests for continuous outcome measures and a multivariable logistic regression model for dichotomized outcomes. RESULTS. Of the 100 women enrolled in the study, 94 completed well woman screening and the postmammography survey. Hispanic/Latina women with access to the promotora providing educational sessions in either the group (mean satisfaction with care score, 78.1) or individual (mean satisfaction with care score, 78.8) setting reported higher satisfaction with care than those receiving the standard of care (mean satisfaction with care score, 74.9) (p < 0.05). The odds of highly compassionate care in women receiving educational sessions was increased and was particularly strong for those receiving individual educational sessions compared with standard of care (odds ratio, 4.78 [95% CI, 1.51-15.13]). We found that increased satisfaction with the promotora was significantly associated with increased satisfaction with care but that group versus individual educational sessions did not significantly impact satisfaction with the promotora. CONCLUSION. Our study findings have important implications as patient navigators and shared decision making become integral to cancer screening. Group educational sessions may offer a method to decrease the time and expense of providing educational services in the cancer screening setting. However, the overall more positive interpersonal experiences suggested in the individual setting suggest that a larger study is warranted to better understand differences between group and individual educational settings.

Processes in Increasing Participation of African American Women in Cancer Prevention Trials: Development and Pretesting of an Audio-Card.

The enrollment of African American women into cancer prevention trials (CPTs) continues to be low despite their higher cancer mortality rates. Clinical trials are vital to the discovery of new prevention, diagnostic, and treatment methods that improve cancer outcomes. This study addressed attitudes and beliefs associated with the sub optimal participation of African American women in CPTs through the development and pretesting of an educational tool. The use of community-engaged research (CER) in the formative phase of this study was the basis for developing an audio-card. Cultural and linguistic elements were incorporated into the tool's audio and written messages, and visual images highlighted the importance of CPT participation among African American women. The CPT beliefs and behavioral intent of 30 African American women who received information from the audio-card were compared with 30 controls. Findings indicated statistically significant differences at posttest between the control and treatment groups in personal value (p = .03), social influence (p = .03), and personal barriers (p = .0001); personal barriers in the pretest group also demonstrated significant differences (p = .009). Consideration of cultural context and language needs of populations are vital to the development and design of effective health promoting tools.

Pragmatic trial of an intervention to increase human papillomavirus vaccination in safety-net clinics.

BACKGROUND: Human papillomavirus (HPV) infection has been causally linked to six cancers, and many disproportionately affect minorties. This study reports on the development and effectiveness of an intervention aimed at increasing HPV vaccine uptake among African American and Hispanic pediatric patients in safety-net clinics. METHODS: Formative research, community engagement, and theory guided development of the intervention. A clustered, non-randomized controlled pragmatic trial was conducted in four clinics providing healthcare for the underserved in Tennessee, U.S., with two intervention sites and two usual care sites. Patients aged 9-18 years (N = 408) and their mothers (N = 305) enrolled, with children clustered within families. The intervention consisted of two provider/staff training sessions and provision of patient education materials, consisting of a video/flyer promoting HPV vaccine. Medical records were reviewed before/after the initial visit and after 12 months. RESULTS: At the initial visit, provision of patient education materials and provider recommendation were higher at intervention sites versus usual care sites, and receipt of HPV vaccine was higher at intervention sites (45.4% versus 32.9%) but not significantly after adjusting for patient's age and mother's education. Provider recommendation, but not education materials, increased the likelihood of vaccine receipt at the initial visit, although over one-third of intervention mothers cited the flyer/video as motivating vaccination. Completion of the 3-dose series at follow-up was lower in the intervention arm. CONCLUSIONS: Future interventions should combine patient education, intensive provider/staff education, and patient reminders. Research should compare patient education focusing on HPV vaccine only versus all adolescent vaccines. TRIAL REGISTRATION: Retrospectively registered with ClinicalTrials.gov NCT02808832 , 9/12/16.

A tailored prostate cancer education intervention for low-income African Americans: impact on knowledge and screening.

African American men bear disproportionate burden of prostate cancer (PCa) that can be reduced by early detection. A 15-minute culturally appropriate PCa education intervention developed to communicate effective, relevant, and balanced PCa screening information to low-income African American men was evaluated in men 42 years and older who had not been screened in one year. Of 539 men enrolled, 392 (72.7%) completed the six-month follow-up. Mean age was 54.4±8.9, 34.7% had no high school diploma, and 65.3% earned less than $25,000 annually. Barriers to screening included health insurance (41.4%), discomfort of digital rectal exam (32.1%), and fear of cancer diagnosis (29.9%). Mean knowledge score of 21 points increased from 13.27±3.51 to 14.95±4.14 (p<.001), and prostate-specific antigen screening from 22.1% to 62.8%. Men without high school diploma recorded the lowest post-intervention PCa knowledge and screening rate (47.7%), suggestive of the need for more than a single education session. Annual physicals with free prostate examination can maintain the positive trend observed.

A community-driven intervention for prostate cancer screening in African Americans.

The purpose of the study was to assess the impact of an educational intervention on prostate cancer screening behavior and knowledge. Participants were 104 African American men, 45 years and older, who had not been screened for prostate cancer with a prostate-specific antigen and/or digital rectal exam within the past year. All participants received an intervention delivered by trained lay community educators using a prostate cancer educational brochure developed in collaboration with the community, with structured interviews preintervention and 3 months postintervention. The main study outcomes included prostate-specific antigen screening rates during the 3-month interval and knowledge, barriers to screenings, and decisional conflict around screening. Compared with the 46 men who did not get screened, the 58 participants who got screened were more likely to have greater than a high school education, annual household incomes ≥$25,000, and a family history of non-prostate cancer (p < .05). Average knowledge scores increased, and barriers to screening scores decreased, from preintervention to postintervention only for participants who had been screened (p < .05). The results of this study demonstrate the feasibility and efficacy of an academic institution collaborating with the African American community to develop a successful prostate cancer educational intervention, an approach that can be expanded to other cancers and other chronic diseases.

Factors influencing colorectal cancer screening in low-income African Americans in Tennessee.

This study examined demographic and lifestyle factors that influenced decisions and obstacles to being screened for colorectal cancer in low-income African Americans in three urban Tennessee cities. As part of the Meharry Community Networks Program (CNP) needs assessment, a 123-item community survey was administered to assess demographic characteristics, health care access and utilization, and screening practices for various cancers in low-income African Americans. For this study, only African Americans 50 years and older (n=460) were selected from the Meharry CNP community survey database. There were several predictors of colorectal cancer screening such as being married and having health insurance (P< .05). Additionally, there were associations between obstacles to screening and geographic region such as transportation and health insurance (P< .05). Educational interventions aimed at improving colorectal cancer knowledge and screening rates should incorporate information about obstacles and predictors to screening.

Community screening outcomes for diabetes, hypertension, and cholesterol: Nashville REACH 2010 project.

Heart disease and diabetes affect millions of individuals in the United States and are among the leading causes of mortality for all racial groups. They share common key risk factors including hypertension and high cholesterol. Community health screenings may play a vital role in identifying, preventing, and controlling these diseases and their associated risk factors. The data were part of the community health screening efforts by the Centers for Disease Control and Prevention-funded Nashville REACH 2010 project. Participants' demographic information and screening outcomes were recorded by project staff trained to conduct community health screenings. The study sample size consisted of 3543 participants. There were no racial differences in the likelihood of screening at-risk or positive for hypertension, diabetes, or high cholesterol. The majority of participants screened at-risk or positive for hypertension and high cholesterol. This study was successful in identifying new cases for these diseases and participants who were inadequately managing either of these health conditions. Given the high percentage of participants who screened at-risk or positive for these 3 health conditions, it will be beneficial for future research to understand the most effective methods of helping these individuals to receive appropriate medical services.

Trends in smoking among African-Americans: a description of Nashville's REACH 2010 initiative.

African Americans bear a disproportionate burden of tobacco related morbidity and mortality despite smoking less than their Caucasian counterparts. Nashville's REACH 2010 initiative developed community partnerships to promote awareness, education and participatory programs to prevent and decrease smoking among residents of the northern geographic area of Nashville, TN, a majority African American community. A social-ecological model provided the framework for interventions used during a 5 year period that included: (a) community level strategies to increase awareness and knowledge about the effects of smoking; (b) individual level strategies to enlist and train community members to become advocates, lead smoking cessation classes and encourage current smokers in quit attempts; and (c) strategies directed to changing policy through education and partnership building. Smoking prevalence among residents was examined from 2001 through 2005 based on data from the Nashville CDC REACH 2010 Risk Factor Survey and the Tennessee CDC Behavioral Risk Factor Survey. Tests for linear trends indicated a significant decreasing trend (P < .02) of daily smoking and smoking uptake (P < .03) in North Nashville. In contrast to our community an increasing trend was observed in quitting smoking (P < .01). No trends were significant for African Americans in Tennessee. This study suggests that consistent, multiple and multi-level strategies targeted to an African American community may impact smokers who are not ready to quit but willing to reduce their level of smoking. This study underscores the importance of developing and implementing community wide campaigns to address the needs of African Americans.

Validity of the SF-12 for use in a low-income African American community-based research initiative (REACH 2010).

INTRODUCTION: The objective of our study was to assess the psychometric properties of the Medical Outcomes Study's 12-Item Short Form Survey Instrument (SF-12) for use in a low-income African American community. The SF-12, a commonly used functional health status assessment, was developed based on responses of an ethnically homogeneous sample of whites. Our assessment addressed the appropriateness of the instrument for establishing baseline indicators for mental and physical health status as part of Nashville, Tennessee's, Racial and Ethnic Approaches to Community Health (REACH) 2010 initiative, a community-based participatory research study. METHODS: A cross-sectional random residential sample of 1721 African Americans responded to a telephone survey that included the SF-12 survey items and other indicators of mental and physical health status. The SF-12 was assessed by examining item-level characteristics, estimates of scale reliability (internal consistency), and construct validity. RESULTS: Construct validity assessed by the method of extreme groups determined that SF-12 summary scores varied for individuals who differed in self-reported medical conditions. Convergent and discriminate validity assessed by multitrait analysis yielded satisfactory coefficients. Concurrent validity was also shown to be satisfactory, assessed by correlating SF-12 summary scores with independent measures of physical and mental health status. CONCLUSION: The SF-12 appears to be a valid measure for assessing health status of low-income African Americans.