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.

Patient-Reported Outcome Measures in Colon and Rectal Surgery: A Systematic Review and Quality Assessment.

BACKGROUND: There is growing interest in using patient-reported outcome measures to support value-based care in colorectal surgery. To draw valid conclusions regarding patient-reported outcomes data, measures with robust measurement properties are required. OBJECTIVE: The purpose of this study was to assess the use and quality of patient-reported outcome measures in colorectal surgery. DATA SOURCES: Three major databases were searched for studies using patient-reported outcome measures in the context of colorectal surgery. STUDY SELECTION: Articles that used patient-reported outcome measures as outcome for colorectal surgical intervention in a comparative effectiveness analysis were included. Exclusion criteria included articles older than 11 years, non-English language, age <18 years, fewer than 40 patients, case reports, review articles, and studies without comparison. MAIN OUTCOME MEASURES: This was a quality assessment using a previously reported checklist of psychometric properties. RESULTS: From 2007 to 2018, 368 studies were deemed to meet inclusion criteria. These studies used 165 distinct patient-reported outcome measures. Thirty were used 5 or more times and were selected for quality assessment. Overall, the measures were generally high quality, with 21 (70%) scoring ≥14 on an 18-point scale. Notable weaknesses included management of missing data (14%) and description of literacy level (0%). LIMITATIONS: The study was limited by its use of original articles for quality assessment. Measures were selected for quality analysis based on frequency of use rather than other factors, such as impact of the article or number of patients in the study. CONCLUSIONS: Patient-reported outcome measures are widely used in colorectal research. There was a wide range of measures available, and many were used only once. The most frequently used measures are generally high quality, but a majority lack details on how to deal with missing data and information on literacy levels. As the use of patient-reported outcome measures to assess colorectal surgical intervention increases, researchers and practitioners need to become more knowledgeable about the measures available and their quality.

Barriers and facilitators to dissemination and adoption of precision medicine among Hispanics/Latinos.

BACKGROUND: With the rapid advances in gene technologies in recent years, the potential benefits of precision medicine (PM) may spread unevenly to disadvantaged populations, such as Hispanics/Latinos. The objective of this study was to explore patient-level barriers and facilitators to dissemination and adoption of PM among Hispanics/Latinos, including knowledge and awareness. METHODS: Self-identified Hispanics/Latinos from diverse countries in Latin America (N = 41) participated in the study. Using a cross-sectional observational qualitative research design, six focus groups and a demographic questionnaire were collected in English and Spanish. Qualitative content analysis was utilized to code the transcripts and identify emerging themes. RESULTS: Hispanics/Latinos never heard of and had no knowledge about PM. Barriers to dissemination and adoption of PM included lack of health insurance, financial burden, participants' immigration status, distrust of government, limited English proficiency, low literacy levels, cultural norms, fear about genetic testing results, lack of transportation, newness of PM, and lack of information about PM. Facilitators included family support; information provided in Spanish; use of plain language and graphics; assistance programs for uninsured; trust in physicians, healthcare staff, well-known hospitals, academic institutions, and health care providers and community organization as sources of reliable information; personal motivation, and altruism or societal benefit. CONCLUSIONS: Culturally-and linguistically-tailored, low-literacy educational material about PM should be created in English and Spanish. Future research should examine provider-level and system-level barriers and facilitators to implementation and adoption of PM among Hispanic/Latino patients.

Racial and ethnic differences in knowledge and attitudes about genetic testing in the US: Systematic review.

Precision medicine has grown over the past 20 years with the availability of genetic tests and has changed the one-size-fits-all paradigm in medicine. Precision medicine innovations, such as newly available genetic tests, could potentially widen racial and ethnic disparities if access to them is unequal and if interest to use them differs across groups. The objective of this systematic review was to synthesize existing evidence on racial and ethnic differences in knowledge of and attitudes toward genetic testing among adult patients and the general public in the US, focusing on research about the use of genetic testing in general, not disease-specific tests. Twelve articles published in 1997-2017 met inclusion and exclusion criteria, with 10 including knowledge variables and seven including attitude variables. Studies found consistent patterns of lower awareness of genetic testing in general among non-Whites compared to Whites, lower factual knowledge scores among Blacks and Hispanics/Latinos, and mixed findings of differences in awareness of direct-to-consumer (DTC) genetic testing or the term precision medicine. Blacks, Hispanics/Latinos, and non-Whites generally had more concerns about genetic testing than Whites. The findings suggest that patients and the general public need access to culturally appropriate educational material about the use of genetic testing in precision medicine.

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.

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.

How do Hispanics/Latinos Perceive and Value the Return of Research Results?

Introduction: Interest in the return of research results has been increasing; however, little is known about how Hispanics/Latinos perceive and value receiving results. This study examined differences among Hispanics/Latinos by education and income in the experience and expectations about the return of research results, perceived value of specific types of information, and the least and most valuable specific information. Method: Retrospective observational design using a cross-sectional national survey sample of Hispanics/Latinos (n = 327). Results: Higher educational attainment was positively associated with the expectation to receive research results, likelihood to participate in research if given study findings, and likelihood to trust researchers if given results. Higher income was positively associated with the perceived value of getting results. Respondents with higher education specifically perceived greater value in information about how lifestyle and genetics affect their risk of disease, how genetics affect how they respond to medications, their ancestry, available clinical trials near them, and how to connect with other study participants. Respondents with higher income perceived greater value in information about how genetics affect their risk of disease and how they respond to medications. Conclusion: The findings offer important insights for planning research initiatives and for developing culturally targeted educational materials for Hispanics/Latinos.

Racial/Ethnic Disparities in Diabetes Quality of Care: the Role of Healthcare Access and Socioeconomic Status.

INTRODUCTION: Blacks, Hispanics, and Asians are disproportionately affected by diabetes. We assessed the state of racial/ethnic disparities in diabetes quality of care in the USA. METHODS: We analyzed cross-sectional data of adults diagnosed with Type 2 diabetes in the nationally representative 2013 Medical Expenditure Panel Survey. Differences in adherence to five diabetes quality of care recommendations (HbA1c twice yearly, yearly foot exam, dilated eye exam, blood cholesterol test, and flu vaccination) were examined by race/ethnicity while controlling for three social determinants of health (health insurance status, poverty, and education) and other demographic variables. RESULTS: Among adults with diabetes in the USA, 74.9% received two or more HbA1c tests, 69.0% had a foot exam, 64.9% had an eye exam, 85.4% had a cholesterol test, and 65.1% received flu vaccination in 2013. Compared to Whites, all were lower for Hispanics; HbA1c tests, eye exam, and flu vaccination were lower for Blacks; HbA1c tests, foot exam, and eye exam were lower for Asians. In adjusted models, the only remaining disparities in quality of care indicators were HbA1c tests for Hispanics (AOR 0.67, CI = 0.47-0.97), Blacks (AOR 0.59, CI = 0.40-0.88), and Asians (AOR 0.47, CI = 0.42-0.99); foot exams for Hispanics (AOR 0.65, CI = 0.47-0.90); and flu vaccination for Blacks (AOR 0.68, CI = 0.49-0.93). CONCLUSION: Lack of insurance coverage and education explained some of the racial/ethnic disparities observed in diabetes quality of care. Improving quality of diabetes care could help reduce rates of diabetes complications, healthcare costs, and mortality.

A Smartphone App for Families With Preschool-Aged Children in a Public Nutrition Program: Prototype Development and Beta-Testing.

BACKGROUND: The Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) in the United States provides free supplemental food and nutrition education to low-income mothers and children under age 5 years. Childhood obesity prevalence is higher among preschool children in the WIC program compared to other children, and WIC improves dietary quality among low-income children. The Children Eating Well (CHEW) smartphone app was developed in English and Spanish for WIC-participating families with preschool-aged children as a home-based intervention to reinforce WIC nutrition education and help prevent childhood obesity. OBJECTIVE: This paper describes the development and beta-testing of the CHEW smartphone app. The objective of beta-testing was to test the CHEW app prototype with target users, focusing on usage, usability, and perceived barriers and benefits of the app. METHODS: The goals of the CHEW app were to make the WIC shopping experience easier, maximize WIC benefit redemption, and improve parent snack feeding practices. The CHEW app prototype consisted of WIC Shopping Tools, including a barcode scanner and calculator tools for the cash value voucher for purchasing fruits and vegetables, and nutrition education focused on healthy snacks and beverages, including a Yummy Snack Gallery and Healthy Snacking Tips. Mothers of 63 black and Hispanic WIC-participating children ages 2 to 4 years tested the CHEW app prototype for 3 months and completed follow-up interviews. RESULTS: Study participants testing the app for 3 months used the app on average once a week for approximately 4 and a half minutes per session, although substantial variation was observed. Usage of specific features averaged at 1 to 2 times per month for shopping-related activities and 2 to 4 times per month for the snack gallery. Mothers classified as users rated the app's WIC Shopping Tools relatively high on usability and benefits, although variation in scores and qualitative feedback highlighted several barriers that need to be addressed. The Yummy Snack Gallery and Healthy Snacking Tips scored higher on usability than benefits, suggesting that the nutrition education components may have been appealing but too limited in scope and exposure. Qualitative feedback from mothers classified as non-users pointed to several important barriers that could preclude some WIC participants from using the app at all. CONCLUSIONS: The prototype study successfully demonstrated the feasibility of using the CHEW app prototype with mothers of WIC-enrolled black and Hispanic preschool-aged children, with moderate levels of app usage and moderate to high usability and benefits. Future versions with enhanced shopping tools and expanded nutrition content should be implemented in WIC clinics to evaluate adoption and behavioral outcomes. This study adds to the growing body of research focused on the application of technology-based interventions in the WIC program to promote program retention and childhood obesity prevention.

A community-based oral health self-care intervention for Hispanic families.

OBJECTIVES: A community-based intervention is described that targets oral health self-care practices among Hispanic children in the United States and is being tested in an ongoing trial. Descriptive results of baseline oral health variables are presented. METHODS: As of January 2013, 284 Hispanic children of ages 5-7 enrolled in the Healthy Families Study in Nashville, TN, USA. Families are randomized to one of two culturally appropriate interventions. RESULTS: At baseline, 69.6 % of children brushed at least twice daily, and 40.6 % brushed before bed daily. One-third of parents did not know if their children's toothpaste contained fluoride. CONCLUSIONS: This intervention fills the need for community-based interventions to improve oral health self-care practices that are culturally appropriate in Hispanic families.

Healthy families study: design of a childhood obesity prevention trial for Hispanic families.

BACKGROUND: The childhood obesity epidemic disproportionately affects Hispanics. This paper reports on the design of the ongoing Healthy Families Study, a randomized controlled trial testing the efficacy of a community-based, behavioral family intervention to prevent excessive weight gain in Hispanic children using a community-based participatory research approach. METHODS: The study will enroll 272 Hispanic families with children ages 5-7 residing in greater Nashville, Tennessee, United States. Families are randomized to the active weight gain prevention intervention or an alternative intervention focused on oral health. Lay community health promoters implement the interventions primarily in Spanish in a community center. The active intervention was adapted from the We Can! parent program to be culturally-targeted for Hispanic families and for younger children. This 12-month intervention promotes healthy eating behaviors, increased physical activity, and decreased sedentary behavior, with an emphasis on parental modeling and experiential learning for children. Families attend eight bi-monthly group sessions during four months then receive information and/or support by phone or mail each month for eight months. The primary outcome is change in children's body mass index. Secondary outcomes are changes in children's waist circumference, dietary behaviors, preferences for fruits and vegetables, physical activity, and screen time. RESULTS: Enrollment and data collection are in progress. CONCLUSION: This study will contribute valuable evidence on efficacy of a childhood obesity prevention intervention targeting Hispanic families with implications for reducing disparities.

Using a participatory research process to address disproportionate Hispanic cancer burden.

Community-based participatory research (CBPR) offers great potential for increasing the impact of research on reducing cancer health disparities. This article reports how the Community Outreach Core (COC) of the Meharry-Vanderbilt-Tennessee State University (TSU) Cancer Partnership has collaborated with community partners to develop and implement CBPR. The COC, Progreso Community Center, and Nashville Latino Health Coalition jointly developed and conducted the 2007 Hispanic Health in Nashville Survey as a participatory needs assessment to guide planning for subsequent CBPR projects and community health initiatives. Trained community and student interviewers surveyed 500 Hispanic adults in the Nashville area, using a convenience sampling method. In light of the survey results, NLHC decided to focus in the area of cancer on the primary prevention of cervical cancer. The survey led to a subsequent formative CBPR research project to develop an intervention, then to funding of a CBPR pilot intervention study to test the intervention.