Inclusion of underserved racial and ethnic groups in cancer intervention research using new media: a systematic literature review.
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SUBMITTER: Thompson HS
PROVIDER: S-EPMC3881998 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundFor unclear reasons, minorities have been historically underrepresented in multiple sclerosis (MS) clinical trials. We hypothesized that different perceptions and preferences about research participation among racial and ethnic groups contribute to this imbalance.MethodsMembers of the MS Minority Research Engagement Partnership Network developed a Web-based survey in English and Spanish on research impressions, concerns, and preferences regarding study attributes among people with MS. Invitations to take the survey were distributed by network members and partner organizations.ResultsWe included 2599 participants with MS (2111 White, 215 African American; 188 Hispanic). Consistently disliked study attributes included potential harms to health and confusing study information. Compared with White and non-Hispanic participants, respectively, African American (odds ratio [OR] = 2.05, P ≤ .001) and Hispanic (OR = 1.79, P = .003) participants were more concerned about being used by the research team. Hispanic participants were more concerned about research participation carrying risks to their legal status (OR = 1.70, P = .001). Hispanic (OR = 3.18, P ≤ .001) and African American (OR = 5.51, P ≤ .001) participants were more likely to prefer for the study to benefit their own racial/ethnic group. A top concern across all groups was not being fully informed about the research.ConclusionsWe found strong support for research across racial and ethnic groups; however, minority groups have specific concerns regarding mistrust, receiving poor-quality care, unemployment, health insurance, and legal status. Investigators wanting to recruit a diverse study population are advised to show how they have addressed these concerns and to communicate how the research will advance the science and literature and result in better care and/or other benefits to underrepresented communities.
| S-EPMC8405146 | biostudies-literature
Project description:The existing data on enrollment trends of historically underserved racial and ethnic children in clinical trials are limited. We sought to evaluate documentation and representation of race and ethnicity in pediatric asthma clinical trials in the United States. This is a cross-sectional study of United States-based interventional trials studying pediatric asthma that were completed between 2008 and 2022 and registered on ClinicalTrials.gov. Enrollment disparities were assessed by using the measure enrollment prevalence difference (EPD) (defined as the median difference between the proportion of participants enrolled and asthma prevalence in the US population by race and ethnicity). Of the 67 trials reviewed, 53 (79.2%) and 36 (53.7%) reported on race and ethnicity at ClinicalTrials.gov, respectively. Most participants were White (39.1%), Black (37.1%), or non-Hispanic (66.1%). Black, Hispanic, multiracial, and White children were enrolled in the expected proportions based on their contribution to asthma burden. However, American Indian or Alaska Native (AI/AN) (EPD = -1 [95% CI = -1 to -1]) and Asian children (EPD = -3 [95% CI = -3 to -3]) were underrepresented relative to disease burden in these respective groups. Fewer Black children were enrolled in drug or device trials (β = -0.80 [95% CI = -1.60 to -0.01]) than in other trials. Fewer Hispanic children were enrolled in early-phase than late-phase trials (β = -2.42 [95% CI = -3.66 to -1.19]). Enrollment in pediatric asthma trials conducted in the United States was commensurate with the demographics of children affected by asthma for most racial and ethnic groups, but American Indian or Alaska Native and Asian children were underrepresented. Concerted efforts are needed to promote inclusion of these underserved groups in future trials.
| S-EPMC11372584 | biostudies-literature
Project description:ImportanceBlack women bear a disproportionate burden of breast cancer mortality in the US, in part due to inequities in the use of mammography. Population screening for breast cancer risk in primary care is a promising strategy for mitigating breast cancer disparities, but it is unknown whether this strategy would be associated with increased mammography rates in underserved women of racial and ethnic minority groups.ObjectiveTo examine whether providing individualized breast cancer risk estimates is associated with an increase in the rate of screening mammography.Design, setting, and participantsA cohort study was conducted in women receiving individualized risk estimates as part of routine primary health care at federally qualified health centers in medically underserved communities in Chicago, Illinois. The study was conducted from November 5, 2013, to December 19, 2014, with data acquisition completed on March 5, 2017; data analysis was performed from December 30, 2020, to February 2, 2021. A total of 347 women aged 25 to 69 years without a personal history of breast cancer presenting for an annual visit with their primary care clinician were enrolled.ExposuresBreast cancer risk estimates were obtained with validated risk assessment tools as a standard component of the clinic check-in process. One of 4 women at average risk and all women at high risk were invited to participate in the study.Main outcomes and measuresThe primary outcome was the mammography rate during 18 months of usual care compared with the rate during 18 months after implementation of risk assessment.ResultsOf the 347 women enrolled, 188 were age-eligible for mammography and were included in the analysis (mean [SD] age, 50.8 [7.04] years); 70 women (37.2%) were Hispanic, 114 (60.6%) were non-Hispanic African American, and 4 (2.1%) were from other racial and ethnic groups (4 non-Hispanic White women). Ninety-eight women (52.1%) had an average risk of developing breast cancer and 90 (47.9%) were at high risk. Overall, there was a nonsignificant increase in the mammography rate, from 38.8% during usual care to 48.9% following implementation of risk assessment (odds ratio, 1.37; 95% CI, 0.92-2.03). In preplanned subgroup analysis, the mammography rate among women at high risk was significantly higher after vs before risk assessment (51.1% vs 36.6%; odds ratio, 1.88; 95% CI, 1.10-3.23).Conclusions and relevanceIn this study, providing individualized breast cancer risk estimates as a component of primary health care in federally qualified health centers was associated with increased use of mammography among women of racial and ethnic minority groups who were at high risk. Implementation of this approach in underserved communities could promote equity in the use of mammography and reduce racial disparities in breast cancer mortality. This strategy warrants further investigation.
| S-EPMC8433603 | biostudies-literature
Project description:PurposeDiet and nutrition are important for cancer prevention. To investigate associations between dietary behavior, demographics, and risk of cancer, we assessed dietary behavior and urinary concentration of gallic acid, a polyphenol with anticancer properties found in various fruits and vegetables, in racial and ethnic minorities.MethodsNinety-one (91) participants were recruited from senior centers in East Harlem, New York City, a racially diverse and underserved community. A National Institute of Health (NIH)-validated dietary survey questionnaire-was used to collect dietary fruits and vegetables consumption data. Demographic and cancer information were also collected. All 91 participants completed the survey and forty-five (45) participants provided urine samples for gallic acid analysis.ResultsGender differences were significantly associated with dietary behavior and urinary gallic acid concentration (UGAC). Female participants had a higher total daily intake of fruits and a significantly higher UGAC compared to male participants (p < 0.05). Age was negatively associated with the serving quantity of French fries/fried potatoes and white potatoes (p < 0.05), while positively associated with the daily intake frequency and daily intake of fruits (p < 0.05). Furthermore, Asian race was associated with higher daily intake frequencies of fruits and vegetable soup (p < 0.05), compared to other races. In a multivariate analysis, a significant association was observed between the serving quantities of fruits and other vegetables and UGAC (p < 0.05) after controlling for demographic characteristics.ConclusionThe observed differences in dietary behavior and UGAC in this study provide limited information on the association between demographic differences and cancer prevalence in elder racial and ethnic minorities. Future research should investigate this association further for potential implications in cancer prevention.
| S-EPMC9188520 | biostudies-literature
Project description:OBJECTIVE: To examine the effectiveness of current community-based participatory research (CBPR) clinical trials involving racial and ethnic minorities. DATA SOURCE: All published peer-reviewed CBPR intervention articles in PubMed and CINAHL databases from January 2003 to May 2010. STUDY DESIGN: We performed a systematic literature review. DATA COLLECTION/EXTRACTION METHODS: Data were extracted on each study's characteristics, community involvement in research, subject recruitment and retention, and intervention effects. PRINCIPLE FINDINGS: We found 19 articles meeting inclusion criteria. Of these, 14 were published from 2007 to 2010. Articles described some measures of community participation in research with great variability. Although CBPR trials examined a wide range of behavioral and clinical outcomes, such trials had very high success rates in recruiting and retaining minority participants and achieving significant intervention effects. CONCLUSIONS: Significant publication gaps remain between CBPR and other interventional research methods. CBPR may be effective in increasing participation of racial and ethnic minority subjects in research and may be a powerful tool in testing the generalizability of effective interventions among these populations. CBPR holds promise as an approach that may contribute greatly to the study of health care delivery to disadvantaged populations.
| S-EPMC3418827 | biostudies-other
Project description:INTRODUCTION:Information on anticipated survival time after dementia diagnosis among racially/ethnically diverse patients is needed to plan for care and evaluate disparities. METHODS:Dementia-free health care members aged ?64 years were followed (1/1/2000-12/31/2013) for dementia diagnosis and subsequent survival (n = 23,032 Asian American; n = 18,778 African American; n = 21,000 Latino; n = 4543 American Indian/Alaska Native; n = 206,490 white). Kaplan-Meier curves were estimated for survival after dementia diagnosis by race/ethnicity. We contrasted mortality patterns among people with versus without dementia using Cox proportional hazards models. RESULTS:After dementia diagnosis (n = 59,494), whites had shortest median survival (3.1 years), followed by American Indian/Alaska Natives (3.4 years), African Americans (3.7 years), Latinos (4.1 years), and Asian Americans (4.4 years). Longer postdiagnosis survival among racial/ethnic minorities compared with whites persisted after adjustment for comorbidities. Racial/ethnic mortality inequalities among dementia patients mostly paralleled mortality inequalities among people without dementia. DISCUSSION:Survival after dementia diagnosis differs by race/ethnicity, with shortest survival among whites and longest among Asian Americans.
| S-EPMC5496783 | biostudies-literature
Project description:Total hip and knee replacement reduces disability associated with lower extremity osteoarthritis. It has been shown that racial and ethnic minority groups underutilize these procedures; however, little information exists on postoperative outcomes for ethnic minorities.We conducted a systematic review of the literature to compile population-based or multicenter studies on early postoperative outcomes after total hip and knee replacement in racial and ethnic minorities.Nine studies met the inclusion criteria. Among the nine eligible studies, four examined total knee replacement, three examined total hip replacement, and two examined both. Two studies investigated mortality after total knee replacement, and one found that blacks had an increased risk of mortality. Three studies investigated infection after total knee replacement; all found an increased risk in blacks and Hispanics. Four studies examined non-infection-related complications after total knee replacement, and all four found that nonwhites had an increased risk of complications. Two studies investigated mortality after total hip replacement; one of these found that, for primary hip replacement, blacks had an increased risk of mortality.There is a paucity of research on outcomes after orthopaedic procedures for racial and ethnic minority groups. On the basis of the available literature, racial and ethnic minority groups appear to have a higher risk for early complications (those occurring within ninety days), particularly joint infection, after total knee replacement and perhaps a higher risk of mortality after total hip replacement.
| S-EPMC2811969 | biostudies-literature
Project description:The racial and ethnic disparities in diet-related chronic diseases are major concerns. This systematic review examines the extent to which diet-induced changes in health outcomes, such as cardiometabolic, inflammation, cancer, bone health, and kidney function outcomes, etc., have been reported and discussed by race or ethnicity in randomized trials with 2 or more diet arms that recruited both minority and non-Hispanic White groups. Databases (i.e., PubMed, Cochrane Library, and Web of Science) were searched up to August 2021. Thirty-four studies that discussed effects of defined dietary interventions on health outcomes by racial or ethnic minority group compared with non-Hispanic Whites were included in the systematic review (PROSPERO registration number: CRD42021229256). Acute trials and those with 1 diet arm that accounted for race or ethnicity in their analyses and studies that focused on a single racial or ethnic group were discussed separately. Most studies were conducted in Black compared with White adults testing effects of energy restriction, macronutrient modification, sodium reduction, or variations of the Dietary Approaches to Stop Hypertension (DASH) diet on cardiometabolic outcomes. There was limited focus on other minority groups. Evidence suggests greater blood pressure reduction for Black adults compared with Whites particularly with DASH (or similar) diets. Overall, there was limited consideration for group-specific eating patterns and diet acceptability. Overall risk of bias was low. With emerging precision nutrition initiatives that aim to optimize metabolic responses in population subgroups through tailored approaches, it is imperative to ensure adequate representation of racial and ethnic subgroups for addressing health disparities. Factors that help explain variability in responses such as socioecological context should be included and adequately powered. Given the racial and ethnic disparities in chronic diseases, studying the adoption, maintenance, and effectiveness of dietary interventions on health outcomes among different groups is critical for developing approaches that can mitigate diet-related health disparities.
| S-EPMC9526835 | biostudies-literature
Project description:The Multigroup Ethnic Identity Measure-Revised (MEIM-R), a brief instrument assessing affiliation with one's ethnic group, is a promising advance in the ethnic identity literature. However, equivalency of its measurement properties across specific racial and ethnic groups should be confirmed before using it in diverse samples. We examined (a) the psychometric properties of the MEIM-R, including factor structure, measurement invariance, and internal consistency reliability, and (b) levels of and differences in ethnic identity across multiple racial and ethnic groups and subgroups. Asian (n = 630), Black/African American (n = 58), Hispanic (n = 240), multiethnic (n = 160), and White (n = 375) women completed the MEIM-R as part of the "Gestational diabetes' Effect on Moms" diabetes prevention trial in the Kaiser Permanente Northern California health care setting (N = 1,463; M age = 32.5 years, SD = 4.9). Multiple-groups confirmatory factor analyses provided provisional evidence of measurement invariance, i.e., an equal, correlated 2-factor structure, equal factor loadings, and equal item intercepts across racial and ethnic groups. Latent factor means for the 2 MEIM-R subscales, exploration and commitment, differed across groups; effect sizes ranging from small to large generally supported the notion of ethnic identity as more salient among people of color. Pending replication, good psychometric properties in this large and diverse sample of women support the future use of the MEIM-R. Preliminary evidence of measurement invariance suggests that the MEIM-R could be used to measure and compare ethnic identity across multiple racial and ethnic groups.
| S-EPMC4110058 | biostudies-literature
Project description:ObjectiveTo examine how similar racial/ethnic disparities in clinical quality (Healthcare Effectiveness Data and Information Set [HEDIS]) and patient experience (Consumer Assessment of Healthcare Providers and Systems [CAHPS]) measures are for different measures within Medicare Advantage (MA) plans.Data sources/study setting5.7 million/492,495 MA beneficiaries with 2008-2009 HEDIS/CAHPS data.Study designBinomial (HEDIS) and linear (CAHPS) hierarchical mixed models generated contract estimates for HEDIS/CAHPS measures for Hispanics, blacks, Asian-Pacific Islanders, and whites. We examine the correlation of within-plan disparities for HEDIS and CAHPS measures across measures.Principal findingsPlans with disparities for a given minority group (vs. whites) for a particular measure have a moderate tendency for similar disparities for other measures of the same type (mean r = 0.51/.21 and 53/34 percent positive and statistically significant for CAHPS/HEDIS). This pattern holds to a lesser extent for correlations of CAHPS disparities and HEDIS disparities (mean r = 0.05/0.14/0.23 and 4.4/5.6/4.4 percent) positive and statistically significant for blacks/Hispanics/API.ConclusionsSimilarities in CAHPS and HEDIS disparities across measures might reflect common structural factors, such as language services or provider incentives, affecting several measures simultaneously. Health plan structural changes might reduce disparities across multiple measures.
| S-EPMC4693842 | biostudies-literature