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Ovarian cancer is considered the most fatal and costly gynecologic cancer. Although personalized therapies have improved ovarian cancer prognosis, they have resulted in increased financial toxicity concerns among this population. This study evaluated financial toxicity in patients with advanced ovarian cancer. Using secondary data from a study of barriers to palliative care, financial toxicity (FT) was measured through the Comprehensive Score for Financial Toxicity scale. Univariate and bivariate analyses were used to assess the relationship between selected demographic (i.e., age, race, ethnicity, education, place of birth, insurance type, yearly household income, employment status) and treatment-specific variables (i.e., years since diagnosis, surgery, chemotherapy, radiation, hormonal and targeted therapy) with clinically relevant financial toxicity. Characteristics were compared using Fisher's exact or chi squared tests. A total of 38 participants with advanced ovarian cancer were included in this study; 24% (n = 9) reported clinically significant FT. Income (p = .001), place of birth (p = .048) and employment status (p = .001) were related to FT. Study findings highlight that advanced ovarian cancer patients experience high FT, particularly those with low income, who are not able to work and were born outside the US. Further research using larger datasets and more representative samples is needed to inform intervention development and implementation.

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The current study examined cancer prevention and early detection awareness (pre-workshop) and changes in knowledge (from pre- to post-workshop) among Hispanic/Latino (H/L) community members who participated in Spanish-language educational outreach events in Puerto Rico (PR) and Florida (FL). Spanish-language educational outreach events were comprised of an educational session lasting approximately 45-60 min and were delivered to groups in rural and urban community settings by a single trained community health educator (CHE). The research team assessed sociodemographic characteristics, personal and familial cancer health history, as well as awareness and knowledge (pre-test) of a range of cancer prevention and screening topics. Following the presentation, participants completed a post-test knowledge survey which also measured likelihood of engaging in cancer screening, cancer preventive behaviors, and cancer research as a result of information presented during the session. Change in the average knowledge score was evaluated using a paired samples t-test. Post-session likelihood of completing cancer screening and preventive behaviors and engaging in cancer research were examined using descriptive statistics and group/site comparisons. The percentage reporting awareness of screening procedures ranged from 33% (PSA test) to 79% (mammogram). H/L in PR reported higher percentage of stool blood test awareness when compared to H/L in FL (χ2(1)= 19.20, p<.001). The average knowledge score increased from 5.97 at pre-test to 7.09 at post-test (Cohen's d=0.69). The increase was significant across all participants (t(315)= 12.4, p<.001), as well as within the FL site (t(124)= 6.66, p<.001, d=0.59) and the PR site (t(190)=10.66, p<.001, d=0.77). Results from this study suggest that educational outreach events delivered to H/L community members by a CHE are valuable strategies to address challenges regarding cancer screening knowledge and engagement in multiple behaviors.

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Background: Human Papillomavirus (HPV) is the most common sexually transmitted infection. High-risk HPV types are the main cause of cervical cancer. Annually, cervical cancer is among the top 10 cancers in Puerto Rican women, with 22% of these cases ending in death. The purpose of this study was to establish the prevalence of high-risk HPV genotypes in a large cohort of young women living in Puerto Rico. Methods: A retrospective longitudinal analysis was performed with a sample of 5,749 HPV results obtained from a clinical database of women ages 21 to 29 from 2014-2016. Results: Outcomes indicate that among those with a positive HPV result, about one-third (35.2%) had a high-risk HPV infection. Women between the ages of 21 to 23 showed the highest prevalence (40.6%) of high-risk HPV. Among genotypes HPV 16 and 18, genotype 16 was the most prevalent. Interestingly, 85.4% of results were positive for other high-risk HPV types other than 16 or 18. Of the 458 women who had at least two tests completed, 217 had an initial positive result for HPV and only 108 (49.7%) resolved the infection. Conclusions: This study confirms the high prevalence of several genotypes of high-risk HPV in young women in a large Puerto Rican sample.

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BACKGROUND: Incidence of skin cancer has been increasing among U.S. Hispanics, who often are diagnosed with larger lesions and at later stage disease. Behaviors to decrease exposure to ultraviolet radiation can reduce risk of skin cancer. We describe skin cancer prevention behaviors and psychosocial variables among Hispanic participants recruited into a skin cancer prevention trial. METHODS: Self-reported Hispanic participants from eight primary care clinics in Tampa, Florida and Ponce, Puerto Rico were recruited into a randomized controlled prevention trial. Information on demographics, sun-related behaviors, and psychosocial variables were collected before intervention materials were provided. Multivariable regression models were used to compare baseline sun-related behaviors and psychosocial variables across groups defined by geographic location and language preference. RESULTS: Participants reported low levels of intentional outdoor tanning, weekday and weekend sun exposure, and very low levels of indoor tanning. However, only a minority of participants practiced sun-protective behaviors often or always, and about 30% experienced a sunburn in the past year. Participants had low levels of recent worry and concern about skin cancer, modest levels of perceived risk and severity, and high levels of response efficacy and self-efficacy. When comparing across groups defined by geographic location and language preference, English-preferring Tampa residents (hereafter referred to as Tampeños) had the highest proportion who were sunburned (35.9%) and tended toward more risky behavior but also had higher protective behavior than did Spanish-preferring Tampeños or Puerto Ricans. Spanish-preferring Puerto Ricans had higher recent concern about skin cancer, comparative chance of getting skin cancer, and response efficacy compared to either English- or Spanish-preferring Tampeños. Spanish-preferring Tampeños had the highest levels of familism and recent distress about skin cancer. CONCLUSIONS: Our results mirror previous observations of low levels of sun-protective behavior among U.S. Hispanics compelling the need for culturally appropriate and translated awareness campaigns targeted to this population. Because Hispanics in Tampa and Puerto Rico reported modest levels of perceived risk and severity, and high levels of response efficacy and self-efficacy, interventions aiming to improve skin cancer prevention activities that are anchored in Protection Motivation Theory may be particularly effective in this population subgroup.

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Objective: To explore factors associated with communication and information-seeking after receipt of skin cancer prevention information among Hispanic individuals. Methods: Multivariable logistic regression was used to analyze existing data on demographics, personal experience, salience, and beliefs variables collected from Hispanic individuals to determine independent associations with sharing and seeking information about skin cancer prevention. Results: Of 578 participants, 53% reported any communication about skin cancer prevention behaviors or skin cancer genetic risk; and 31% and 21% sought additional information about preventive behaviors or genetic risk, respectively. Female sex, greater perceived severity, higher comparative chance of getting skin cancer, and lower health literacy were associated with greater communication, while having no idea of one's own skin cancer risk was related to less communication. Greater health numeracy and higher cancer worry were associated with information-seeking about prevention behaviors and genetic risk. Conclusion: Up to half of participants reported communication or information-seeking, although factors associated with specific activities differed. Future studies should evaluate how to promote communication behaviors in the Hispanic community and how sharing and seeking information influence an individual's network prevention practices. Innovation: Several factors related to communication behaviors among Hispanic people after obtaining skin cancer prevention information were identified.Trial registration: This trial was registered on clinicaltrials.gov (NCT03509467).

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OBJECTIVE: To identify predictors of genetic risk recall and examine whether recall influences adoption of skin cancer preventive behaviors among Hispanic individuals. METHODS: Hispanic participants randomized to intervention arms (n = 463) of a precision prevention trial were provided MC1R risk information (average, higher) and asked to recall their risk after 3 and 9 months. Predictors of recall (correct versus did not recall/misremembered) were determined by backwards stepwise logistic regression. Intervention effects on preventive behaviors were estimated within strata of 3-month recall. RESULTS: Age inversely predicted correct recall in both risk groups (average: OR3-months(3)= 0.97, 95%CI:0.94-1.01, OR9-months(9)= 0.96, 95%CI:0.93-0.99; higher: OR3 = 0.98, 95%CI:0.95-1.01, OR9 = 0.98, 95%CI:0.95-1.00). Education positively predicted recall among participants at average risk (OR3 =1.64, 95%CI:1.06-2.63, OR9 =1.73, 95%CI:1.12-2.81). Darker untanned skin color inversely predicted recall among participants at higher risk (OR3 =0.68, 95%CI:0.45-0.99, OR9 =0.74, 95%CI:0.50-1.09). Intervention effects for routine sunscreen use and undergoing a clinical skin exam were stronger among participants at higher risk who correctly recalled at 3 months than those who did not recall/misremembered. CONCLUSIONS: Younger age, higher education, and lighter untanned skin color predicted correct recall. Better recall may improve skin cancer prevention outcomes. PRACTICE IMPLICATIONS: Additional strategies are needed to boost recall among Hispanic individuals who are older, less educated, and darker-skinned.

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Compared with non-Hispanic White women, Latina women are less likely to receive genetic counseling (GC) and testing (GT) following BC diagnosis. This study used secondary data analysis to explore beliefs about GC among Latina BC survivors in and outside the US mainland. GC/GT-naïve, high-risk, Spanish-preferring Latina BC survivors (n = 52) in FL and PR completed the Behavioral Beliefs about GC scale. Participants reported high positive beliefs about GC (M = 4.19, SD = 0.92); the majority agreed that GC was beneficial to understand cancer risk (90%) and promote discussion (87%) in their family. Participants reported low-to-moderate scores for barriers (Ms = 1.53-3.40; SDs = 0.59-0.90). The most frequently endorsed barriers were desire for additional GC information (M = 3.44; SD = 0.90), and GC logistic concerns (M = 2.71; SD = 0.80). No statistically significant differences for barriers and benefits scales were identified by place of residence (all ps ≥ 0.12). These findings highlight the importance of delivering culturally sensitive GC information to high-risk Latina BC survivors.

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OBJECTIVE: To assess Hispanic participants' ratings of intervention materials and examine differences by language preference. METHODS: Participants on a skin cancer prevention trial were randomized to receive generic (n = 457) or precision prevention materials conveying average (n = 195) or higher genetic risk (n = 268) based on MC1R genotype. Three months after receiving either English or Spanish language prevention materials, participants reported amount read, believability and clarity of materials, and intention to change preventive behavior. RESULTS: Participants reported high levels on all four outcomes, but the precision prevention groups noted lower clarity than the generic group (p = 3.2 ×10-6). Participants preferring Spanish provided consistently higher scores than those preferring English. Among English-preferring participants, those in the precision prevention groups scored lower on all measures than those in the generic group. CONCLUSIONS: Skin cancer prevention materials were well-received by Hispanic participants. Higher scores among participants preferring Spanish may indicate acquiescence bias, or that translated prevention materials met their linguistic needs. Participants in the precision prevention groups with English language preference may have challenges in the uptake of genetic risk results. PRACTICE IMPLICATIONS: Availability of Spanish materials may have facilitated higher scores. Additional strategies should be explored to optimize participants' believability and clarity of precision prevention materials.

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Skin cancer risk information based on melanocortin-1 receptor (MC1R) variants could inform prevention and screening recommendations for Hispanics, but limited evidence exists on the impact of MC1R variants in Hispanic populations. We studied Hispanic subjects, predominately of Puerto Rican heritage, from Tampa, Florida, US, and Ponce, PR. Blood or saliva samples were collected by prospective recruitment or retrieved from biobanks for genotyping of MC1R variants and ancestry informative markers. Participant demographic and self-reported phenotypic information was collected via biobank records or questionnaires. We determined associations of MC1R genetic risk categories and phenotypic variables and genetic ancestry. Over half of participants carried MC1R variants known to increase risk of skin cancer, and there was diversity in the observed variants across sample populations. Associations between MC1R genetic risk groups and some pigmentation characteristics were identified. Among Puerto Ricans, the proportion of participants carrying MC1R variants imparting elevated skin cancer risk was consistent across quartiles of European, African, and Native American genetic ancestry. These findings demonstrate that MC1R variants are important for pigmentation characteristics in Hispanics and that carriage of high risk MC1R alleles occurs even among Hispanics with stronger African or Native American genetic ancestry.

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Cancer is the leading cause of death in Puerto Rico, suggesting a need for improved strategies, programs, and resources devoted to cancer prevention. Enhanced prevention needs in Puerto Rico were initially identified in pilot studies conducted by the Ponce School of Medicine (PSM) in collaboration with the H. Lee Moffitt Cancer Center (MCC). In the current study, we used community engagement to identify specific needs in cancer prevention and education and strategies to create culturally attuned, effective cancer prevention education programs. A total of 37 participants attended a community forum and were assigned to one of three discussion groups: patients/survivors (n = 14); family/caregivers (n = 11); or healthcare providers (n = 12). Most participants were women (73 %), over 35 years of age, and a majority were married (58 %) and had a university education (81 %). The sessions were recorded and transcribed and analyzed for key themes. Participants wanted improved awareness of cancer prevention in Puerto Rico and believed cancer prevention education should start early, ideally in elementary school. Participants also stressed the importance of creating partnerships with private and government agencies to coordinate educational efforts. Suggested strategies included outreach to communities with limited resources, incorporating the testimony of cancer survivors, and utilizing social media to disseminate cancer prevention information.

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OBJECTIVE: To assess needs perceptions regarding the importance of and satisfaction with psychosocial support among cancer patients and survivors in Puerto Rico. METHODS: A cross-sectional study was conducted in 181 participants (70 men and 111 women) who were either undergoing cancer treatment (patients) or had completed cancer treatment (survivors). Participants completed a sociodemographic and clinical characteristics questionnaire, and the Psychosocial Needs Inventory (PNI). RESULTS: The participants reported having or having had prostate (36%) or breast (32%) cancer or some other cancer type (32%). Of the 149 participants reporting cancer type, 130 were classified as having a high perceived level of health and quality of life, and 19 were classified as having a low perceived level of health and quality of life. In terms of perceived needs, the highest level of importance were assigned to the Support Network (e.g. family, friends, neighbors, care professionals; M = 2.88, SD = 0.43) and Health Professional (e.g., patient-health professional relationship, etc.; M = 2.80, SD = 0.50) categories, and the Emotional and Spiritual category was given the lowest importance (e.g., help managing negative emotions and spiritual counseling, etc.; M = 2.62, SD = 0.66). These perceptions varied by gender, perceived health status, and date of diagnosis. Women assigned more importance to the Health Professional and Information categories. CONCLUSION: The results reflect the importance of considering psychosocial needs when providing psychosocial support to cancer patients and survivors. These findings are anticipated to inform services provided by psychosocial oncology support programs in Puerto Rico.

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OBJECTIVE: The objectives of this study were to identify cancer-related health care services and to explore the presence of inter-organizational interactions among clinical and support oncology services in southern Puerto Rico. METHODS: From January through July of 2010, a survey was completed by 54 health care organizations offering clinical, supportive, or both services to cancer patients/survivors (CPS) in southern PR. Survey data were compiled and descriptive analyses performed using the software Statistical Package for a Social Science (SPSS), version 18.0. RESULTS: The distribution of the primary services provided by the participating organizations was the following: 26 had clinical services, 16 had support services, and 12 offered a combination of clinical and support services. Only 24 % of the surveyed organizations offered their services exclusively to patients diagnosed with cancer. In terms of referral practices, 61 % of the responses were for medical specialists, 43 % were for mental health services, and 37 % were referrals for primary care services. The most common reason for interacting (n = 27) was to provide a given patient both a referral and information. CONCLUSION: Findings suggest gaps in both the availability of oncology services and the delivery of integrated health care. Lack of communication among clinical and support organizations (for cancer patients, specifically) could negatively impact the quality of the services that they offer. Further network analysis studies are needed to confirm these gaps. Until systemic, structural changes occur, more efforts are needed to facilitate communication and collaboration among these kinds of organization.

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BACKGROUND: Little is known about barriers to Hereditary Breast and Ovarian Cancer (HBOC) genetic counseling among Puerto Rican women. OBJECTIVE: This study reviews existing literature to identify individual, interpersonal, and systems level factors that may impact the use of HBOC genetic services among Puerto Rican women living in the United States. METHODS: A systematic search of articles published between the years 1995-2014 was performed in PubMed and ISI Web of Science. Additionally, the bibliography of relevant articles was reviewed for additional potential articles. RESULTS: Individual level barriers most frequently identified included: a lack of knowledge or awareness about HBOC or genetic counseling and testing, and facilitators included high levels of interest in genetic counseling/genetic testing. Interpersonal level barriers included worry about knowing a family member's risk, and conversely, a facilitator was the ability to help family members. Systems level barriers included concerns about the cost, having competing life demands, whereas facilitators included holding private insurance. CONCLUSION: Puerto Rican women are a unique ethnic minority group with specific perceptions, beliefs and levels of education about genetic counseling and testing for HBOC. Addressing individual, interpersonal and systems level factors unique to this group may improve knowledge and awareness. Policy and structural changes may be needed to improve system level barriers.

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The disproportionate burden of cancer among U.S. Hispanics is well documented. Historically, epidemiologic data on U.S. Hispanics and cancer have aggregated all Hispanics as one homogeneous group without appreciating the diversity of this population with regard to nativity (nationality/geographic origin). The authors report on the initial efforts of a collaborative academic institutional partnership between a minority-serving institution and a National Cancer Institute-designated cancer center to address cancer health disparities in two Hispanic communities in Puerto Rico and Florida. This article outlines the joint Outreach Program's initial collaborative strategies and activities in community outreach, cancer education, and research that mutually benefit both the Ponce (Puerto Rico) and Tampa (Florida) Hispanic communities. This partnership program used innovative multipronged community-engagement strategies in the two communities to reduce cancer health disparities. Specific projects and lessons learned from three outreach/cancer education projects and two pilot research projects are discussed. The challenges of balancing service and research agendas in communities with disparate levels of resources and infrastructure are summarized to inform future initiatives in this partnership, as well as serve as an example for similar minority-serving institution/cancer center partnerships to reduce cancer health disparities.

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A goal of the Minority Institution/Cancer Center Partnership between the Ponce School of Medicine in Puerto Rico and the H. Lee Moffitt Cancer Center & Research Institute in Florida is to provide cross-cultural training in cancer research. This is achieved through a collaborative summer exchange program, which provides US students with an opportunity to conduct research in Puerto Rico. As part of this program, students recruited participants and collected data for a study to enhance the understanding of sociocultural factors among Puerto Rican women regarding genetic testing for hereditary breast/ovarian cancer. Limited studies have examined cancer genetics issues among Latinos, particularly those specific to the various Latino subgroups, such as Puerto Ricans. As a result of the student training experience, culturally appropriate strategies for the recruitment of women in Puerto Rico have been identified. These recommendations can inform the design of cancer research projects and interventions targeting the Puerto Rican population.

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Colorectal cancer (CRC) is currently associated with one of the highest burdens of morbidity and mortality among American men and women. Racial/ethnic disparities are well documented and the subject of intense research and intervention. Our understanding of disparities related to awareness and perceptions about causes, risk factors, and screening for CRC among subgroups of blacks in the United States is limited. This may be in part because grouping US-born blacks and foreign-born blacks as one homogeneous group obscures possible within-group differences. This study aimed to explore the cultural perceptions of CRC among 3 ethnic subgroups of blacks: African Americans (US born), foreign-born blacks from English-speaking Caribbean countries, and Haitian-born blacks. The study was informed by a community-based participatory research approach, using a cross-sectional mixed qualitative and quantitative methods design. A total of 62 individuals from the 3 ethnic subgroups participated in semistructured, in-depth qualitative and structured quantitative interviews. Qualitative findings revealed no stark differences among the 3 ethnic subgroups in their overall perceptions of cancer as well as their attitudes related to barriers, motivation, and resources for CRC screening. However, there were subtle differences in perceptions of curability, preventive practices, and preferred sources of information among the three ethnic subgroups of US blacks. The study has important implications for the design of educational materials and targeted interventions for diverse groups of US blacks.

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Hispanic women often have low participation rates in cancer genetics research. Additionally, Hispanic sub-ethnicities may have varying accrual rates based on unique cultural factors. Hispanic women were recruited through flyers placed in the Tampa Bay Community to participate in an interview about knowledge of hereditary breast and ovarian cancer. The study goal was to recruit 20 women from each Hispanic sub-ethnicity: Puerto Rican, Mexican, and Cuban. This article reports on the difficulty in recruiting Mexican women. One hundred forty-three women called the study hotline to inquire about participation. Seventy-six callers were ineligible for the study. Thirty-four percent (n = 26) of ineligibles were Mexican women; within this group, 62% (n = 16) were unable to participate because they did not know the cancer site of their first degree relative. Inclusion criteria requiring knowledge of family history of cancer for behavioral research may be too stringent. The socio-cultural norms of Mexican families may not include discussions of cancer specifics. This study demonstrates Mexican women may have limited knowledge about their family history of cancer. Considerations of these knowledge limitations should be built into cancer genetics-related research. Referral criteria to assess the risk of hereditary breast and ovarian cancer by cancer genetics professionals are predicated on the patient providing details about cancer within multiple generations of family members, thus, posing a barrier for Mexican women who may have limited knowledge of their family history of cancer.

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OBJECTIVE: Cancer health disparities are evident among Puerto Rican Hispanics, both for those on the island and in the mainland United States. Less is known about cancer care services available on the island. Through the Ponce School of Medicine and Moffitt Cancer Center partnership, focus groups with health care providers (HCP) were conducted to explore needs and barriers related to cancer care services with an ultimate goal of developing a cancer control and prevention program for the southern area of Puerto Rico. METHODS: To engage the community in outreach efforts to identify barriers to cancer care in Ponce, Puerto Rico, we conducted two focus groups with HCPs from a variety of settings, including general hospitals, private clinics, pharmacies, and government agencies. These 90-minute focus groups were conducted in Spanish and moderated using a semi-structured interview guide that explored the needs and barriers related to cancer control and prevention services. RESULTS: We analyzed content using the emergent material for identifying patterns, themes, and perceptions. Our qualitative analysis indicated that providers had significant concerns about unmet patient needs and system factors, which served as barriers to quality cancer care delivery. Key barriers included unmet practical needs, such as transportation, treatment affordability, lack of resources, and unmet needs for social support and education services. CONCLUSION: Future research will examine other key informants' (e.g., patients, caregivers) perspectives and identify which issues can be addressed by the partnership grant and which must be addressed by policymakers.

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BACKGROUND: Little is known about the preferences of at-risk Hispanic women to gain information on hereditary breast and ovarian cancer (HBOC). AIMS: This study sought to qualitatively explore preferences for HBOC information among at-risk Mexican, Puerto Rican and Cuban women and to pilot a mock brochure aimed at Hispanic women. METHODS: Hispanic women aged 18-65 years with a personal or family history of breast or ovarian cancer participated in a semistructured interview. Data were analyzed using a combination of open-coding and content analysis. RESULTS: Fifty-three women participated in the study. For the majority of content areas, there were no major differences between the subethnicities. All women reported discussing cancer with a doctor after a family member had been diagnosed and discussing cancer within their families; however, the content of the discussion varied. Cuban and Puerto Rican women reported using the Internet routinely for health care information while Mexican women said they did not have access to computers and did not use them. All women liked the content and photos in the brochure but Mexican women thought the reading level was too high. Preferences for the spokesperson focused on the need for Spanish-speaking health care providers. CONCLUSIONS: While the data show some similarities, such as patterns of cancer discussion and appreciation of the mock brochure, there were differences between the groups on information preferences. In designing HBOC education information for Hispanic audiences, it is important to consider varied channels for dissemination and preferences for specific types of information across subethnicities.

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PURPOSE/OBJECTIVES: To explore perceptions of colorectal cancer (CRC) and self-reported CRC screening behaviors among ethnic subgroups of U. S. blacks. DESIGN: Descriptive, cross-sectional, exploratory, developmental pilot. SETTING: Medically underserved areas in Hillsborough County, FL. SAMPLE: 62 men and women aged 50 years or older. Ethnic subgroup distribution included 22 African American, 20 English-speaking Caribbean-born, and 20 Haitian-born respondents. METHODS: Community-based participatory research methods were used to conduct face-to-face individual interviews in the community. MAIN RESEARCH VARIABLES: Ethnic subgroup, health access, perceptions of CRC (e.g., awareness of screening tests, perceived risk, perceived barriers to screening), healthcare provider recommendation, and self-reported CRC screening. FINDINGS: Awareness of CRC screening tests, risk perception, healthcare provider recommendation, and self-reported use of screening were low across all subgroups. However, only 55% of Haitian-born participants had heard about the fecal occult blood test compared to 84% for English-speaking Caribbean-born participants and 91% for African Americans. Similarly, only 15% of Haitian-born respondents had had a colonoscopy compared to 50% for the English-speaking Caribbean and African American subgroups. CONCLUSIONS: This exploratory, developmental pilot study identified lack of awareness, low risk perception, and distinct barriers to screening. The findings support the need for a larger community-based study to elucidate and address disparities among subgroups. IMPLICATIONS FOR NURSING: Nurses play a major role in reducing cancer health disparities through research, education, and quality care. Recognition of the cultural diversity of the U. S. black population can help nurses address health disparities and contribute to the health of the community.

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