RESUMO
PURPOSE: To understand participant preferences for receiving specific types of research information, whether information preferences vary across sociodemographic groups, and the types of health providers participants could access to understand returned information. METHODS: All of Us Research Program participants completed a value of returning research information survey. Stratified sampling was implemented to enhance participant diversity and avoid noncoverage. We used weighted multivariable logistic regression to evaluate associations between the most valuable information types, access to providers, and sociodemographic variables. RESULTS: Participants (N = 20,405) were diverse in their race/ethnicity (eg, 52% were White, 18% were Hispanic/Latino or Spanish, 3% were Asian, and 20% were Black or African American). Most participants (78.6%) valued information about their risk of serious genetic diseases with available treatment. Primary care physicians, specialists, and genetic counselors were the top providers that participants could access for help understanding returned information. Information preferences and provider access varied across sociodemographic groups. For example, as income levels increased, the odds of placing value on genetic results indicating risk of serious disease with available treatment increased when compared with the lowest income levels (P value < .001). CONCLUSION: Although genetic information was most valuable to participants, preferences about specific information types varied across sociodemographic groups.
Assuntos
Aconselhamento Genético , Humanos , Feminino , Masculino , Adulto , Pessoa de Meia-Idade , Estados Unidos , Inquéritos e Questionários , Idoso , Etnicidade , Preferência do Paciente , Adulto Jovem , AdolescenteRESUMO
OBJECTIVES: A major strategy to reduce the impact of breast cancer (BC) among African Americans (AA) is patient navigation, defined here as individualized assistance for reducing barriers to healthcare use. The primary focus of this study was to estimate the added value of incorporating breast health promotion by navigated participants and the subsequent BC screenings that network members may obtain. METHODS: In this study, we compared the cost-effectiveness of navigation across 2 scenarios. First, we examine the effect of navigation on AA participants (scenario 1). Second, we examine the effect of navigation on AA participants and their networks (scenario 2). We leverage data from multiple studies in South Chicago. Our primary outcome (BC screening) is intermediate, given limited available quantitative data on the long-term benefits of BC screening for AA populations. RESULTS: When considering participant effects alone (scenario 1), the incremental cost-effectiveness ratio was $3845 per additional screening mammogram. When including participant and network effects (scenario 2), the incremental cost-effectiveness ratio was $1098 per additional screening mammogram. CONCLUSION: Our findings suggest that inclusion of network effects can contribute to a more precise, comprehensive assessment of interventions for underserved communities.
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Neoplasias da Mama , Navegação de Pacientes , Humanos , Feminino , Negro ou Afro-Americano , Mamografia , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/prevenção & controle , Promoção da Saúde , Detecção Precoce de Câncer , Rede SocialRESUMO
African American (AA) women experience much greater mortality due to breast cancer (BC) than non-Latino Whites (NLW). Clinical patient navigation is an evidence-based strategy used by healthcare institutions to improve AA women's breast cancer outcomes. While empirical research has demonstrated the potential effect of navigation interventions for individuals, the population-level impact of navigation on screening, diagnostic completion, and stage at diagnosis has not been assessed. An agent-based model (ABM), representing 50-74-year-old AA women and parameterized with locally sourced data from Chicago, is developed to simulate screening mammography, diagnostic resolution, and stage at diagnosis of cancer. The ABM simulated three counterfactual scenarios: (1) a control setting without any navigation that represents the "standard of care"; (2) a clinical navigation scenario, where agents receive navigation from hospital-affiliated staff; and (3) a setting with network navigation, where agents receive clinical navigation and/or social network navigation (i.e., receiving support from clinically navigated agents for breast cancer care). In the control setting, the mean population-level screening mammography rate was 46.3% (95% CI: 46.2%, 46.4%), the diagnostic completion rate was 80.2% (95% CI: 79.9%, 80.5%), and the mean early cancer diagnosis rate was 65.9% (95% CI: 65.1%, 66.7%). Simulation results suggest that network navigation may lead up to a 13% increase in screening completion rate, 7.8% increase in diagnostic resolution rate, and a 4.9% increase in early-stage diagnoses at the population-level. Results suggest that systems science methods can be useful in the adoption of clinical and network navigation policies to reduce breast cancer disparities.
Assuntos
Neoplasias da Mama , Navegação de Pacientes , Negro ou Afro-Americano , Idoso , Neoplasias da Mama/diagnóstico , Chicago , Detecção Precoce de Câncer , Feminino , Humanos , Mamografia , Pessoa de Meia-Idade , Navegação de Pacientes/métodosRESUMO
BACKGROUND: Patient navigation is an increasingly widespread intervention to address the persistent, severe, and disproportionate breast cancer (BC) burden that African Americans (AA) face. Navigation may have more widespread effects than previously estimated due to patient-driven diffusion of BC information. METHODS: This pilot study examined the network effects of a randomized controlled trial via recruitment of navigated and non-navigated AA BC patients as well as their network members. We estimated study arm differences in patient BC promotion (i.e., number of individuals to whom BC patients promote BC screening) and network BC screening (i.e., % BC screening among network members). RESULTS: Among our sample of 100 AA BC patients, navigated patients promoted BC screening to more individuals than non-navigated patients. BC patients were more likely to promote BC screening to children and individuals with whom they communicated more frequently. Some models further suggested more network BC screening among "navigated" network members relative to "non-navigated" network members. CONCLUSIONS: Navigated AA patients promoted BC screening more widely throughout their networks than non-navigated AA BC patients. There were also suggestive findings regarding increased BC screening among their network members. Our pilot study highlights the potential for social network analysis to improve the precision of intervention effect estimates and to inform future innovations (e.g., integrating navigation and network-based interventions) with multilevel effects on cancer health disparities.
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Neoplasias da Mama , Navegação de Pacientes , Negro ou Afro-Americano , Criança , Feminino , Amigos , Humanos , Projetos PilotoRESUMO
INTRODUCTION: Genomic/precision medicine offers a remarkable opportunity to improve health and address health disparities. Genomic medicine is the study of genes and their interaction with health. Precision medicine is an approach to disease prevention and treatment that considers individual variability in genes, environment and lifestyle. Conclusions from studies lacking diversity may hinder generalizability as genomic variation occurs within and between populations. Historical factors, such as medical mistrust, ethical issues related to decision making, and data sharing pose complex challenges that may further widen inequities in genomic/precision medicine if not appropriately addressed. Although few biomedical studies integrate priorities of community partners into their conceptual framework, effective implementation of genomic/precision medicine research calls for the involvement of diverse stakeholders to expand traditional unidirectional models of engagement in clinical research towards authentic bidirectional collaboration. METHODS: A multipronged approach was used integrating an evidence-based literature review and best practices in developing and evaluating the engagement of diverse stakeholders in genomic and precision medicine research. This was combined with expert consensus building to adapt a conceptual model from a community engagement framework to addressing genomics to be scalable to engagement science, which is challenging to genomic/precision medicine research. RESULTS: The final enhanced conceptual framework is composed of four overarching dimensions now inclusive of domains in trust, exploitation, discrimination, privacy risk, stigmatization, prior harms/injustices, failure to recognize coexisting governments, intersectionality and research transformation. This conceptual framework proposes effective participant research engagement strategies for upstream relationship building, distinct from downstream recruitment strategies in which the goal is enrolment. CONCLUSION: To further shape the evolution of genomic/precision medicine research, it is important to leverage existing partnerships, engage participants beyond recruitment and embrace diverse perspectives. PATIENT OR PUBLIC CONTRIBUTION: In preparation of this manuscript, the perspectives of the community partners on the impact of engaging in genomic/precision medicine research beyond research participation were integrated into this conceptual framework from various guided listening sessions held in diverse communities.
Assuntos
Medicina de Precisão , Confiança , Genômica/métodos , Humanos , Medicina de Precisão/métodos , Projetos de PesquisaRESUMO
PURPOSE: The Prostate Health Index is validated for prostate cancer detection but has not been well validated for Gleason grade group 2-5 prostate cancer detection in Black men. We hypothesize that the Prostate Health Index has greater accuracy than prostate specific antigen for detection of Gleason grade group 2-5 prostate cancer. We estimated probability of overall and Gleason grade group 2-5 prostate cancer across previously established Prostate Health Index ranges and identified Prostate Health Index cutoffs that maximize specificity for Gleason grade group 2-5 prostate cancer with sensitivity >90%. MATERIALS AND METHODS: We recruited a "cancer-free" Black control cohort (135 patients) and a cohort of biopsy naïve Black men (158) biopsied for elevated prostate specific antigen. Descriptive statistics compared the prostate cancer cases and controls and the frequency of Gleason grade group 2-5 prostate cancer across Prostate Health Index scores. Receiver operating characteristics compared the discrimination of prostate specific antigen, Prostate Health Index and other prostate specific antigen related biomarkers. Sensitivity and specificity for Gleason grade group 2-5 prostate cancer detection were assessed at prostate specific antigen and Prostate Health Index thresholds alone and in series. RESULTS: Of biopsied subjects 32.9% had Gleason grade group 2-5 prostate cancer. In Blacks with prostate specific antigen from 4.0-10.0 ng/ml, Prostate Health Index and prostate specific antigen had similar discrimination for Gleason grade group 2-5 prostate cancer (0.63 vs 0.57, p=0.27). In Blacks with prostate specific antigen ≤10.0, a threshold of prostate specific antigen ≥4.0 had 90.4% sensitivity for Gleason grade group 2-5 prostate cancer; a threshold of prostate specific antigen ≥4.0 with Prostate Health Index ≥35.0 in series avoided unnecessary biopsy in 33.0% of men but missed 17.3% of Gleason grade group 2-5 prostate cancer. Prostate specific antigen ≥4.0 with Prostate Health Index ≥28.0 in series spared biopsy in 17.9%, while maintaining 90.4% sensitivity of Gleason grade group 2-5 prostate cancer. CONCLUSIONS: The Prostate Health Index has moderate accuracy in detecting Gleason grade group 2-5 prostate cancer in Blacks, but Prostate Health Index ≥28.0 can be safely used to avoid some unnecessary biopsies in Blacks.
Assuntos
Biópsia/estatística & dados numéricos , Negro ou Afro-Americano , Neoplasias da Próstata/sangue , Neoplasias da Próstata/patologia , Adulto , Idoso , Biomarcadores Tumorais/sangue , Estudos de Casos e Controles , Chicago , Humanos , Masculino , Pessoa de Meia-Idade , Gradação de Tumores , Antígeno Prostático Específico/sangue , Sensibilidade e Especificidade , Procedimentos DesnecessáriosRESUMO
PURPOSE: Social support improves several quality of life (QOL) domains among African American breast cancer survivors. How different dimensions of social support are associated with QOL among African American breast cancer survivors may however differ from other populations. This study explores this hypothesis by examining associations of positive social support (supportive interactions that promote affection) and negative social support (non-supportive interactions wherein the provider of support may not have the best intended actions) with QOL among Chicago-based African American breast cancer survivors. METHODS: Study participants were eligible if they (1) were identified as being an African American female, (2) were at least 18 years of age or older, and (3) were diagnosed with breast cancer during or after navigation was implemented at the study hospital. Participants completed validated questionnaires via telephone or in-person interviews. RESULTS: Among our sample of 100 participants, positive support was associated with greater mental well-being in non-imputed (Std ß=1.60, CI: 0.51, 2.69, p= 0.004) and imputed models (Std ß= 1.67, CI: 0.68, 2.73, p=0.001). There was also a weaker inverse association with negative support and mental well-being when using non-imputed data (Std ß=-0.82, CI:-1.65, 0.02, p= 0.05). CONCLUSIONS: Our findings suggest that positive support, in particular, is highly influential for improving mental well-being among African American breast cancer survivors. Simultaneously, negative support appears to be an independent, albeit weaker, determinant of mental well-being.
Assuntos
Neoplasias da Mama , Sobreviventes de Câncer , Apoio Social , Adolescente , Adulto , Negro ou Afro-Americano , Idoso , Neoplasias da Mama/terapia , Feminino , Humanos , Medicare , Qualidade de Vida , Estados UnidosRESUMO
PURPOSE: We explored relationships between patient-provider communication quality (PPCQ) and three quality of life (QOL) domains among self-identified rural cancer survivors: social well-being, functional well-being, and physical well-being. We hypothesized that high PPCQ would be associated with greater social and functional well-being, but be less associated with physical well-being, due to different theoretical mechanisms. METHODS: All data were derived from the 2017-2018 Illinois Rural Cancer Assessment (IRCA). To measure PPCQ and QOL domains, we respectively used a dichotomous measure from the Medical Expenditure Panel Survey's Experience Cancer care tool (high, low/medium) and continuous measures from the Functional Assessment of Cancer Therapy-General (FACT-G). RESULTS: Our sample of 139 participants was largely female, non-Hispanic White, married, and economically advantaged. After adjusting for demographic and clinical variables, patients who reported high PPCQ exhibited greater social well-being (Std. ß = 0.20, 95% CI: 0.03, 0.35, p = 0.02) and functional well-being (Std. ß = 0.20, 95% CI: 0.05, 0.35, p = 0.03) than patients with low/medium PPCQ. No association was observed between PPCQ and physical well-being (Std. ß = 0.06, 95% CI: - 2.51, 0.21, p = 0.41). Sensitivity analyses found similar, albeit attenuated, patterns. CONCLUSION: Our findings aligned with our hypotheses. Future researchers should explore potential mechanisms underlying these differential associations. Specifically, PPCQ may be associated with social and functional well-being through interpersonal mechanisms, but may not be as associated with physical well-being due to multiple contextual factor rural survivors disproportionately face (e.g., limited healthcare access, economic hardship) and stronger associations with clinical factors.
Assuntos
Sobreviventes de Câncer/estatística & dados numéricos , Neoplasias/mortalidade , Qualidade de Vida/psicologia , Comunicação , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , População Rural , Análise de SobrevidaRESUMO
PURPOSE: Rural women, compared to urban, experience worse survivorship outcomes, including poorer health-related quality of life (QOL). There is a need to characterize the role of multilevel social factors that contribute to QOL, including context, networks, and functioning. Our objectives were to (1) use latent class analysis to identify distinct classes of social context and social networks and (2) examine how multilevel social factors (context, networks, and functioning) are associated with health-related QOL. METHODS: We recruited self-identified rural survivors to the Illinois Rural Cancer Assessment (2017-2018), via community-based sampling methods, and participants completed the survey online, by phone, or on paper. We used latent class analysis to generate multidimensional variables for contextual and network factors. We next modeled each social factor sas a predictor in separate, bivariable linear regressions for the QOL outcomes, followed by multivariable, adjusted regressions. RESULTS: For our first objective, there were three classes each of county-level contexts (1, highly rural, socioeconomically disadvantaged, and mostly lacking in cancer-related services; 2, mostly rural, moderately disadvantaged, and underserved; 3, mostly metropolitan, less disadvantaged, and most-resourced) and social networks (1, no caregivers; 2, only spousal caregivers with whom they communicated daily; 3, multiple caregivers with varying daily communication). For our second objective, among all social factors, only functioning was associated with better mental health-related QOL. No factors were associated with physical health-related QOL. CONCLUSIONS: Our findings suggest a rich diversity of social context and networks among rural female cancer survivors, and social functioning is particularly important for mental health-related QOL.
Assuntos
Sobreviventes de Câncer/psicologia , Neoplasias/terapia , Qualidade de Vida/psicologia , População Rural/estatística & dados numéricos , Apoio Social , Idoso , Idoso de 80 Anos ou mais , Cuidadores , Feminino , Humanos , Pessoa de Meia-Idade , Autorrelato , Ajustamento Social , Meio Social , Inquéritos e Questionários , SobrevivênciaRESUMO
BACKGROUND: Trends in breast cancer mortality in the United States are decreasing, but racial disparities persist. Using an implementation science framework to inform evidence-based breast cancer screening and navigation within federally qualified health centers (FQHCs) with community stakeholders can mitigate barriers to screening. METHODS: Using an integrated theoretical framework of the Practical, Robust Implementation and Sustainability Model and the Social Ecological Model, the University of Illinois Cancer Center and Mile Square Health Centers (MSHC) FQHC developed a breast cancer screening and navigation program, known as the Mile Square Accessible Mammogram Outreach and Engagement (Mi-MAMO) program, to tackle breast cancer disparities in Chicago among underresourced communities. To increase access to screening, patient navigators conducted community outreach activities. Partnerships were forged with community-based organizations, health care systems, and insurers. Outcomes were monitored with standardized performance measures. RESULTS: Between January and December 2017, 103 women received a screening mammogram at MSHC. To increase screening rates, Mi-MAMO was started in August 2017. Between January and December 2018, the number of women who received a screening mammogram increased to 567. From August 2017 to December 2018, 779 women received navigation to screening and/or diagnostic services through the Mi-MAMO program. The majority of women were uninsured (63.9%), and 95.5% were racial/ethnic minorities. Twenty-four percent (n = 185) completed diagnostic services, and 10 women received positive breast cancer diagnoses (mean age, 49.7 years); all successfully navigated to treatment. The Mi-MAMO program is ongoing. CONCLUSIONS: Deploying an integrated framework for patient navigation programs can increase breast cancer screening utilization and awareness among underresourced populations at higher risk for breast cancer.
Assuntos
Neoplasias da Mama/diagnóstico por imagem , Detecção Precoce de Câncer/métodos , Área Carente de Assistência Médica , Navegação de Pacientes/organização & administração , Neoplasias da Mama/etnologia , Chicago/etnologia , Prática Clínica Baseada em Evidências , Feminino , Promoção da Saúde , Humanos , Mamografia , Pessoas sem Cobertura de Seguro de Saúde/etnologia , Pessoas sem Cobertura de Seguro de Saúde/estatística & dados numéricos , Pessoa de Meia-Idade , Guias de Prática Clínica como AssuntoRESUMO
Cardiovascular disparities remain pervasive in the United States. Unequal disease burden is evident among population groups based on sex, race, ethnicity, socioeconomic status, educational attainment, nativity, or geography. Despite the significant declines in cardiovascular disease mortality rates in all demographic groups during the last 50 years, large disparities remain by sex, race, ethnicity, and geography. Recent data from modeling studies, linked micromap plots, and small-area analyses also demonstrate prominent variation in cardiovascular disease mortality rates across states and counties, with an especially high disease burden in the southeastern United States and Appalachia. Despite these continued disparities, few large-scale intervention studies have been conducted in these high-burden populations to examine the feasibility of reducing or eliminating cardiovascular disparities. To address this challenge, on June 22 and 23, 2017, the National Heart, Lung, and Blood Institute convened experts from a broad range of biomedical, behavioral, environmental, implementation, and social science backgrounds to summarize the current state of knowledge of cardiovascular disease disparities and propose intervention strategies aligned with the National Heart, Lung, and Blood Institute mission. This report presents the themes, challenges, opportunities, available resources, and recommended actions discussed at the workshop.
Assuntos
Pesquisa Biomédica/tendências , Doenças Cardiovasculares/terapia , Educação/tendências , Disparidades em Assistência à Saúde/tendências , National Heart, Lung, and Blood Institute (U.S.)/tendências , Relatório de Pesquisa/tendências , Pesquisa Biomédica/economia , Pesquisa Biomédica/métodos , Doenças Cardiovasculares/economia , Doenças Cardiovasculares/epidemiologia , Serviços de Saúde Comunitária/economia , Serviços de Saúde Comunitária/métodos , Serviços de Saúde Comunitária/tendências , Educação/economia , Educação/métodos , Disparidades em Assistência à Saúde/economia , Humanos , National Heart, Lung, and Blood Institute (U.S.)/economia , Estados Unidos/epidemiologiaRESUMO
PURPOSE: We explored how lifetime comorbidities and treatment-related cancer symptoms were associated with quality of life (QOL) in rural cancer survivors. METHODS: Survivors (n = 125) who were rural Illinois residents aged 18+ years old were recruited from January 2017 to September 2018. We conducted 4 multivariable regressions with QOL domains as outcomes (social well-being, functional well-being, mental health-MHQOL, physical health-PHQOL); the number of physical and psychological comorbidities (e.g., arthritis, high blood pressure, stroke) and treatment-related cancer symptoms (e.g., worrying, feeling sad, lack of appetite, lack of energy) as predictors; and, cancer-related and demographic factors related to these variables as covariates. RESULTS: The number of comorbidities and number of treatment-related symptoms were inversely associated with functional well-being (Std ß = - 0.36, p < 0.0001 and - 0.18, p = 0.03), and MHQOL (Std ß = - 0.30, p = 0.001 and Std ß = - 0.25, p = 0.004). Comorbidities were associated inversely with social well-being (Std ß = - 0.27, p = .003). Comorbidities and treatment-related symptoms were not associated with PHQOL (p = 0.20-0.24). Sensitivity analyses suggested that psychological comorbidities, treatment-related psychological symptoms, and physical comorbidities were associated with social well-being, functional well-being, and MHQOL. CONCLUSIONS: Our study highlights the utility of risk-based survivorship care plans to address the negative, additive impact of comorbidities and the treatment-related symptoms to improve the health-related QOL among rural survivors. Future research should assess how contextual factors (e.g., geographic distance to oncologists and other providers) should be incorporated in survivorship care planning and implementation for rural survivors.
Assuntos
Sobreviventes de Câncer/estatística & dados numéricos , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/epidemiologia , Neoplasias , Qualidade de Vida , População Rural/estatística & dados numéricos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Antineoplásicos/efeitos adversos , Protocolos Antineoplásicos , Sobreviventes de Câncer/psicologia , Comorbidade , Demografia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/complicações , Neoplasias/epidemiologia , Neoplasias/terapia , Qualidade de Vida/psicologia , Sobrevivência , Adulto JovemRESUMO
We offer a framework and exemplify how to integrate multiple community perspectives in research to develop breast cancer screening interventions among Latinas non-adherent to national guidelines. We leverage members of an academic institution's community consultative service [community engagement advisory board (CEAB) members]; study team members [community health workers (CHWs)] and study-eligible individuals (non-adherent Latinas). First, we asked what was needed from CEAB members (N=17), CHWs (N=14) and non-adherent Latinas (N=20) in one-time semi-structured group consultations and focus groups. Second, we drafted materials. Third, we conducted group consultations and focus groups with a new set of CEAB members (N=13), CHWs (N=17) and non-adherent Latinas (N=16) to reflect on our initial analysis and draft materials. Fourth, we finalized interventions. Certain recommendations were shared across stakeholders and simple to integrate (e.g. costs â access to free services). Some recommendations varied, but complementary integration was possible (e.g. location versus recruitment â multiple recruitment in multiple community areas). Others were distinct across stakeholders and resulted in strategies to recognize participants' agency and inform their choices about breast cancer screening (e.g. differences in preferred information about screening â personalized information and evidence about all screening options).
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Neoplasias da Mama/diagnóstico , Participação da Comunidade , Hispânico ou Latino , Programas de Rastreamento , Aceitação pelo Paciente de Cuidados de Saúde , Cooperação do Paciente , Adulto , Feminino , Grupos Focais , Fidelidade a Diretrizes , HumanosRESUMO
BACKGROUND: Black women are more likely to be diagnosed at a later stage of breast cancer in part due to barriers to timely screening mammography, resulting in poorer mortality and survival outcomes. Patient navigation that helps to overcome barriers to the early detection of breast cancer is an effective intervention for reducing breast cancer disparity. However, the ability to recognize and seek help to overcome barriers may be affected by gendered and racialized social expectations of women. METHODS: Data from a randomized controlled trial, the Patient Navigation in Medically Underserved Areas study, were used. The likelihood of obtaining a follow-up screening mammogram was compared between women who identified ≥1 barriers and those who did not. RESULTS: Of the 3754 women who received the Patient Navigation in Medically Underserved Areas navigation intervention, approximately 14% identified ≥ 1 barriers, which led to additional navigator contacts. Consequently, those women who reported barriers were more likely to obtain a subsequent screening mammogram. Black women, women living in poverty, and women with a higher level of distrust were less likely to report barriers. CONCLUSIONS: Minority women living in poverty have always been the source of social support for others. However, gendered and racialized social expectations may affect the ways in which women seek help for their own health needs. A way to improve the effectiveness of navigation would be to recognize how minority women's gender images and expectations could shape how they seek help and support. A report of no barriers does not always translate into no problems. Proactive approaches to identify potential barriers may be beneficial.
Assuntos
Neoplasias da Mama/diagnóstico por imagem , Neoplasias da Mama/etnologia , Diagnóstico Tardio , Navegação de Pacientes/métodos , Negro ou Afro-Americano/estatística & dados numéricos , Chicago/etnologia , Diagnóstico Tardio/estatística & dados numéricos , Detecção Precoce de Câncer , Feminino , Acessibilidade aos Serviços de Saúde , Humanos , Mamografia/estatística & dados numéricos , Programas de Rastreamento , Área Carente de Assistência Médica , Pessoa de Meia-Idade , Avaliação de Programas e Projetos de Saúde , Ensaios Clínicos Controlados Aleatórios como Assunto , Fatores SocioeconômicosRESUMO
PURPOSE: To address locally relevant cancer-related health issues, health departments frequently need data beyond that contained in standard census area-based statistics. We describe a geographic information system-based method for calculating age-standardized cancer incidence rates in non-census defined geographical areas using publically available data. METHODS: Aggregated records of cancer cases diagnosed from 2009 through 2013 in each of Chicago's 77 census-defined community areas were obtained from the Illinois State Cancer Registry. Areal interpolation through dasymetric mapping of census blocks was used to redistribute populations and case counts from community areas to Chicago's 50 politically defined aldermanic wards, and ward-level age-standardized 5-year cumulative incidence rates were calculated. RESULTS: Potential errors in redistributing populations between geographies were limited to <1.5% of the total population, and agreement between our ward population estimates and those from a frequently cited reference set of estimates was high (Pearson correlation r = 0.99, mean difference = -4 persons). A map overlay of safety-net primary care clinic locations and ward-level incidence rates for advanced-staged cancers revealed potential pathways for prevention. CONCLUSIONS: Areal interpolation through dasymetric mapping can estimate cancer rates in non-census defined geographies. This can address gaps in local cancer-related health data, inform health resource advocacy, and guide community-centered cancer prevention and control.
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Sistemas de Informação Geográfica , Neoplasias/epidemiologia , Adolescente , Adulto , Idoso , Censos , Chicago/epidemiologia , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Sistema de Registros , Adulto JovemRESUMO
Health disparities persist among Black men, notably in the context of lung cancer and stress-related health outcomes. This study explores these disparities through a community-based participatory research (CBPR) approach, citizen science, and social network theory, leveraging the expertise and trust of Black barbers as community leaders. The purpose is to understand the nuanced connections between stress and lung cancer in this demographic. Engaging 161 Black men across four Chicago neighborhoods, the study successfully collected hair samples and survey data, emphasizing the importance of culturally sensitive recruitment strategies. Findings highlight the effectiveness of the collaboration, showcasing the role of barbershops as community hubs for research. The study concludes by advocating for sustained partnerships with community leaders, emphasizing transparency in research communication, and promoting culturally grounded approaches to address health disparities and enhance research participation among underrepresented populations.
Assuntos
Promoção da Saúde , Neoplasias Pulmonares , Humanos , Masculino , Negro ou Afro-Americano , Pesquisa Participativa Baseada na Comunidade , BarbeariaRESUMO
Community-engaged patient navigation safety net programs are established as an evidence-based approach to address cancer prevention and early detection efforts, but barriers to expand and sustain such programs persist. In addition, few studies describe how these programs impact buy-in among communities and policy change within health care systems and government. We describe how we used the Capacity for Sustainability Framework to guide efforts for program sustainability and community, institutional, and policy level change in a breast cancer screening and patient navigation safety net program. The nine domains of the Capacity for Sustainability Framework were used to develop program logic models, to inform program implementation and quality improvement agendas, and to guide multi-level partner and stakeholder engagement, outreach, and dissemination of outcomes. The program is currently in its seventh year and continues to be annually funded by a city public health department. In 2021, additional 5-year renewable funding from a state public health department was secured. In addition, institutional program support was expanded for patients diagnosed with breast cancer. Program leaders worked with policymakers to draft legislation to support training certification and third-payor reimbursement for patient navigators and community health workers. The program is well-known and trusted among community members, community-based organizations, and providers. Community, organizational, and policy-level outcomes demonstrate that community-engaged patient navigation safety net programs can influence more than individual and interpersonal outcomes and can be sustained over time.
Assuntos
Neoplasias da Mama , Detecção Precoce de Câncer , Avaliação de Programas e Projetos de Saúde , Provedores de Redes de Segurança , Humanos , Neoplasias da Mama/prevenção & controle , Neoplasias da Mama/diagnóstico , Feminino , Provedores de Redes de Segurança/organização & administração , Navegação de Pacientes/organização & administração , Política de SaúdeRESUMO
OBJECTIVES: During the last two decades, researchers and funders increasingly recognised the value of engaging patients and communities in research. Despite progress, community engagement remains challenging. There are few examples of successful participant engagement in governance of large-scale research programmes. Here we describe efforts to engage participants as partners in new governance roles in the All of Us Research Program, a precision medicine research initiative which intends to enrol at least one million participants. Using intentional, participant-centric engagement strategies, the All of Us Engagement Core recruited and integrated a diverse group of participants into governance roles including Steering and Executive Committees. Evaluation measures included a survey to assess Consortium Members' readiness for participant engagement. RESULTS: Over a 3-year period, all items on the survey increased (higher readiness). Of the 291 respondents to the 2021 survey, respondents most frequently agreed that participant perspectives are essential (100%), participants understand enough to contribute meaningfully (94%) and participants should be involved in setting goals (96%). Respondents least frequently agreed that participants should have an equal voice in Working Groups (75%), Steering Committee (69%) and Executive Committee (63%). CONCLUSION: In conclusion, participants can be effectively integrated into large-scale research governance, which is associated with increased researcher readiness for engagement.
Assuntos
Saúde da População , Humanos , Inquéritos e QuestionáriosRESUMO
Purpose: To examine the association of cigarette use and smoking-related health conditions by race/ethnicity among diverse and low-income patients at a federally qualified health center (FQHC). Methods: Demographics, smoking status, health conditions, death, and health service use were extracted from electronic medical data for patients seen between September 1, 2018, and August 31, 2020 (n=51,670). Smoking categories included everyday/heavy smoker, someday/light smoker, former smoker, or never smoker. Results: Current and former smoking rates were 20.1% and 15.2%, respectively. Males, Black, White, non-partnered, older, and Medicaid/Medicare patients were more likely to smoke. Compared with never smokers, former and heavy smokers had higher odds for all health conditions except respiratory failure, and light smokers had higher odds of asthma, chronic obstructive pulmonary disease, emphysema, and peripheral vascular disease. All smoking categories had more emergency department visits and hospitalizations than never smokers. The associations between smoking status and health conditions differed by race/ethnicity. White patients who smoked had a greater increase in odds of stroke and other cardiovascular diseases compared with Hispanic and Black patients. Black patients who smoked had a greater increase in odds of emphysema and respiratory failure compared with Hispanic patients. Black and Hispanic patients who smoked had a greater increase in emergency care use compared with White patients. Conclusion: Smoking was associated with disease burden and emergency care and differed by race/ethnicity. Health Equity Implications: Resources to document smoking status and offer cessation services should be increased in FQHCs to promote health equity for lower income populations.
RESUMO
Multiple evidence-based interventions (EBIs) have been developed to improve the completion of colorectal cancer (CRC) screening within Federally Qualified Health Centers (FQHCs) and other safety net settings in marginalized communities. Little effort has been made, however, to evaluate their relative effectiveness across different clinical contexts and populations. To this end, we tested the relative effectiveness of three EBIs (mailed birthday cards, lay navigation, and provider-delivered education) among a convenience sample of 1252 patients (aged 50-75 years old, who were due for CRC screening and scheduled for a visit at one of three clinics within a network of Federally Qualified Health Centers (FQHCs) in the United States. To be eligible for the study, patients had to identify as African American (AA) or Latino American (LA). We compared the effects of the three EBIs on CRC screening completion using logistic regression. Overall, 20% of the study population, an increase from a baseline of 13%, completed CRC screening. Clinical demographics appeared to influence the effectiveness of the EBIs. Mailed birthday reminders appeared to be the most effective within the multi-ethnic clinic (p = 0.03), provider-delivered education within the predominantly LA clinic (p = 0.02), and lay navigation within the predominantly AA clinic (p = 0.03). These findings highlight the importance of understanding clinical context when selecting which evidence-based interventions to deploy.