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Background: Data dashboards that can communicate complex and diverse catchment area data effectively can transform cancer prevention and care delivery and strengthen community engagement efforts. Engaging stakeholders in data dashboard development, by seeking their inputs and collecting feedback, has the potential to maximize user-centeredness. Objective: To describe a systematic, stakeholder-driven, and theory-based approach for developing catchment area data visualization tools for cancer centers. Methods: Cancer-relevant catchment area data were identified from national- and state-level data sources (including cancer registries, national surveys, and administrative claims databases). A prototype tool for data visualization was designed, developed, and tested based on the OPT-In [ O rganize, P lan, T est, In tegrate] framework. A working group of multi-disciplinary experts collected stakeholder feedback through formative assessment to understand data and design preferences. Thematic areas, data elements, and the composition and placement of data visuals in the prototype were identified and refined by working group members. Visualizations were rendered in Tableau © and embedded in a public-facing website. A mixed-method approach was used to assess the understandability and actionability of the tool and to collect open-ended feedback that informed action items for improvisation. Results: We developed a visualization dashboard that illustrates cancer incidence and mortality, risk factor prevalence, healthcare access, and social determinants of health for the Hollings Cancer Center catchment area. Color-coded maps, time-series plots, and graphs illustrate these catchment area data. A total of 21 participants representing key stakeholders [general audience (n=4), community advisory board members and other representatives (n=7), and researchers (n=10)] were identified. The understandability and actionability scores exceeded the minimum (80%) threshold. Stakeholders' feedback confirmed that the tool is effective in communicating cancer data and is useful for education and advocacy. Themes that emerged from qualitative data suggest that additional changes to the tool such as a warm color palette, data source transparency, and the addition of analytical features (data overlaying and area-resolution selection) would further enhance the tool. Integration of communication efforts and messages within a broader context is in progress. Discussion: A catchment area data resource developed through a systematic, stakeholder- driven, and theory-based approach can meet (and surpass) benchmarks for understandability and actionability, and lead to an overall positive response from stakeholders. Creating channels for advocacy and forming community partnerships will be the next step necessary to promote policies and programs for improving cancer outcomes in the catchment areas.
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Higher breast cancer mortality rates continue to disproportionally affect black women (BW) compared to white women (WW). This disparity is largely due to differences in tumor aggressiveness that can be related to distinct ancestry-associated breast tumor microenvironments (TMEs). Yet, characterization of the normal microenvironment (NME) in breast tissue and how they associate with breast cancer risk factors remains unknown. N-glycans, a glucose metabolism-linked post-translational modification, has not been characterized in normal breast tissue. We hypothesized that normal female breast tissue with distinct Breast Imaging and Reporting Data Systems (BI-RADS) categories have unique microenvironments based on N-glycan signatures that varies with genetic ancestries. Profiles of N-glycans were characterized in normal breast tissue from BW (n = 20) and WW (n = 20) at risk for breast cancer using matrix assisted laser desorption/ionization (MALDI) mass spectrometry imaging (MSI). A total of 176 N-glycans (32 core-fucosylated and 144 noncore-fucosylated) were identified in the NME. We found that certain core-fucosylated, outer-arm fucosylated and high-mannose N-glycan structures had specific intensity patterns and histological distributions in the breast NME dependent on BI-RADS densities and ancestry. Normal breast tissue from BW, and not WW, with heterogeneously dense breast densities followed high-mannose patterns as seen in invasive ductal and lobular carcinomas. Lastly, lifestyles factors (e.g. age, menopausal status, Gail score, BMI, BI-RADS) differentially associated with fucosylated and high-mannose N-glycans based on ancestry. This study aims to decipher the molecular signatures in the breast NME from distinct ancestries towards improving the overall disparities in breast cancer burden.
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Manosa , Polisacáridos , Humanos , Femenino , Polisacáridos/metabolismo , Polisacáridos/química , Manosa/metabolismo , Manosa/química , Persona de Mediana Edad , Neoplasias de la Mama/metabolismo , Neoplasias de la Mama/patología , Glicómica , Mama/metabolismo , Mama/química , Mama/patología , Fucosa/metabolismo , Fucosa/química , Adulto , Microambiente TumoralRESUMEN
INTRODUCTION: It is estimated that 1.9 million new cases of cancer will be diagnosed in 2023, with 33,890 occurring in South Carolina. Assessing the needs, barriers, and facilitators of healthcare professionals' (HCP) education in South Carolina is a step towards creating meaningful, equity-promoting cancer-based education/training. METHODS: We developed a mixed-methods REDCap survey instrument to assess HCP needs, which we disseminated via email to HCPs from divisions involved in cancer care in a South Carolina academic medical center health system. We analyzed quantitative data with univariate frequency analysis and employed an inductive content analysis approach for qualitative data. RESULTS: The response rate for the survey was 33.0% (95/284) and 44.2% (42/95) of respondents reported a perceived barrier to attending educational programming, with majority citing time. Most respondents (71.8%) self-identified as non-Hispanic White. HCPs reported having clear interests in trainings, particularly ones focused on additional training in diversity, equity, and inclusion (DEI). Other identified educational needs included cancer treatment updates, nutrition, mental health, and social risk factors. Receiving credits for the trainings was a motivator for both general topics and DEI topics (94.7% and 74.7%, respectively). CONCLUSIONS: There is a need to better align cancer education delivery for HCPs with their training needs and busy schedules as has been a demonstrated want by HCPs in topics that would increase knowledge and practice of DEI. As majority of respondents identified as non-Latine White, it is imperative to diversify the knowledge of the workforce to ensure that HCPs provide optimal care to patients from diverse backgrounds.
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Evaluación de Necesidades , Neoplasias , Humanos , South Carolina , Neoplasias/terapia , Femenino , Masculino , Personal de Salud/educación , Encuestas y Cuestionarios , Adulto , Persona de Mediana Edad , Diversidad CulturalRESUMEN
Background: In the USA, HPV vaccine coverage is substantially lower among adolescents from high-income households compared to their low-income counterparts. We examined and compared the factors associated with parental HPV vaccination intentions between socioeconomically divergent groups. Methods: Data from unvaccinated and not fully HPV-vaccinated adolescents from the 2017-2021 National Immunization Survey (NIS)-Teen were analyzed. Socioeconomically advantaged vs. deprived groups were identified based on dichotomized income (material capital) and education (social capital). Parental intent to initiate and complete the HPV vaccine series was compared using bivariable analysis and the factors associated with lacking intent were identified. Findings: The 2017-2021 NIS-Teen included a total of 212,643 participants; the final analytical sample consisted of 105,958 adolescents (an estimated 10.3 million adolescents) who were unvaccinated or not fully vaccinated. In the advantaged group, 64.7% of parents of unvaccinated adolescents (equating to 2.4 million US adolescents) had no intention to initiate the HPV vaccine compared to 40.9% of parents in the deprived group (equating to 0.2 million adolescents) (P < 0.0001; S > 13.29). The most frequent reason for lacking intent in the advantaged group was 'safety concerns' (25.5%). In the deprived group, 'lack of knowledge', 'not recommended', and 'not needed' were common reasons (nearly 15% each). Lack of intent to complete the HPV vaccine series was higher in the advantaged group (43.9%; 1.1 million adolescents) compared to the deprived group (25.2%; 0.08 million adolescents) (P < 0.0001; S > 13.29). More than half in the advantaged group (58.4%) and over a third (37.1%) in the deprived group cited 'already up to date' as the main reason for not completing the HPV vaccine series. Interpretation: Lack of intent to initiate and complete the HPV vaccination series, particularly among socioeconomically advantaged parents is a significant barrier to achieving the national goal in the USA. Funding: The US National Institute on Minority Health and Health Disparities, the National Center for Advancing Translational Sciences, MUSC Hollings Cancer Center Seed funding, and the US National Cancer Institutes.
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OBJECTIVE: Despite established clinical practice guidelines for pediatric obstructive sleep-disordered breathing (SDB), disparities persist for this common condition. Few studies have investigated parental experiences about challenges faced in obtaining SDB evaluation and tonsillectomy for their children. To better understand parent-perceived barriers to treatment of childhood SDB, we administered a survey to assess parental knowledge of this condition. MATERIALS & METHODS: A cross-sectional survey was designed to be completed by parents of children diagnosed with SDB. Two validated surveys were administered: 1) Barriers to Care Questionnaire and 2) Obstructive Sleep-Disordered Breathing and Adenotonsillectomy Knowledge Scale for Parents. Logistic regression modeling was performed to assess for predictors of parental barriers to SDB care and knowledge. RESULTS: Eighty parents completed the survey. Mean patient age was 7.4 ± 4.6 years, and 48 (60%) patients were male. The survey response rate was 51%. Patient racial/ethnic categories included 48 (60.0%) non-Hispanic White, 18 (22.5%) non-Hispanic Black, and 14 (17.5%) Other. Parents reported challenges in the 'Pragmatic' domain, including appointment availability and cost of healthcare, as the most frequently described barrier to care. Adjusting for age, sex, race, and education, parents in the middle-income bracket ($26,500 - $79,500) had higher odds of reporting greater barriers to care than parents in the highest (>$79,500) income tier (OR 5.536, 95% CI 1.312-23.359, P = 0.020) and lowest income tier (<$26,500) (OR 3.920, 95% CI 1.096-14.020). Parents whose children had tonsillectomy (n = 40) answered only a mean 55.7% ± 13.3% of questions correctly on the knowledge scale. CONCLUSION: Pragmatic challenges were the most encountered barrier that parents reported in accessing SDB care. Families in the middle-income tier experienced the greatest barriers to SDB care compared to lower and higher income families. In general, parental knowledge of SDB and tonsillectomy was relatively low. These findings represent potential areas of improvement to target interventions to promote equitable care for SDB.
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Disparidades en Atención de Salud , Padres , Síndromes de la Apnea del Sueño , Apnea Obstructiva del Sueño , Síndromes de la Apnea del Sueño/diagnóstico , Síndromes de la Apnea del Sueño/terapia , Apnea Obstructiva del Sueño/diagnóstico , Apnea Obstructiva del Sueño/terapia , Adenoidectomía , Tonsilectomía , Conocimientos, Actitudes y Práctica en Salud , Padres/psicología , Encuestas y Cuestionarios , Estudios Transversales , Humanos , Masculino , Femenino , Preescolar , Niño , Accesibilidad a los Servicios de SaludRESUMEN
Like cancer, Alzheimer's disease and related dementias (ADRD) comprise a global health burden that can benefit tremendously from the power of disease registry data. With an aging population, the incidence, treatment, and mortality from ADRD is increasing and changing rapidly. In the same way that current cancer registries work toward prevention and control, so do ADRD registries. ADRD registries maintain a comprehensive and accurate registry of ADRD within their state, provide disease prevalence estimates to enable better planning for social and medical services, identify differences in disease prevalence among demographic groups, help those who care for individuals with ADRD, and foster research into risk factors for ADRD. ADRD registries offer a unique opportunity to conduct high-impact, scientifically rigorous research efficiently. As research on and development of ADRD treatments continue to be a priority, such registries can be powerful tools for conducting observational studies of the disease. This perspectives piece examines how established cancer registries can inform ADRD registries' impact on public health surveillance, research, and intervention, and inform and engage policymakers.
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OBJECTIVE: Despite evidence-based guidelines for obstructive sleep-disordered breathing (SDB), recent studies continue to highlight treatment inequities. We used qualitative research methods to examine parental facilitators and barriers to SDB treatment. STUDY DESIGN: Qualitative interviews. SETTING: Tertiary care center. METHODS: Semistructured interviews were conducted (January-April 2022) with parents of children with SDB who underwent tonsillectomies to understand the processes of SDB detection and accessing specialty care. Interviews were conducted until thematic saturation was reached and coded using NVivo software. RESULTS: Of the 17 parents who completed the key informant interviews, 6 (35%) were of non-Hispanic black race, and 3 (17.6%) interviews were conducted in Spanish. Parents noted that the more knowledge their primary care provider (PCP) had about SDB, the easier it was to obtain a diagnostic workup (41%). The most common barrier included difficulty obtaining a specialist (otolaryngology or sleep medicine) referral from their PCP and encountering providers who were dismissive of parent-reported symptoms related to SDB, leading them to seek a second opinion or self-refer (53%). Medicaid coverage was a strong facilitator to receipt of care (59%). Three (17.6%) parents noted alienation in the process due to racial bias or language barriers. CONCLUSION: Parental interviews revealed that facilitators of SDB treatment included high clinician knowledge and perceived importance of SDB as well as Medicaid insurance which decreased financial strain. Parents also cited the attainment of referrals as a significant barrier to obtaining specialty evaluation. These findings identify potential modifiable areas to tailor future interventions for timely and equitable SDB care.
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Síndromes de la Apnea del Sueño , Apnea Obstructiva del Sueño , Niño , Humanos , Síndromes de la Apnea del Sueño/terapia , Síndromes de la Apnea del Sueño/cirugía , Apnea Obstructiva del Sueño/diagnóstico , Apnea Obstructiva del Sueño/terapia , Padres , Investigación Cualitativa , Accesibilidad a los Servicios de SaludRESUMEN
Human papillomavirus (HPV) infections are linked to at least six different types of cancer. The Medical University of South Carolina (MUSC) Hollings Cancer Center (HCC) and Department of Pediatrics leaders identified suboptimal rates of HPV vaccinations in rural and medically underserved communities in South Carolina (SC). To address this major public health problem in SC, they received funding from the HealthyMe/HealthySC (HMHSC) program and HCC to create a statewide community engagement-focused HPV Vaccination Van Program in October 2021. The Program provides HPV vaccinations and other childhood immunizations in school districts and HMHSC health clinics throughout SC, focusing on children aged 9-18 who are eligible for the U.S. Centers for Disease Control and Prevention's Vaccines for Children Program. As of 14 December 2022, the Program administered vaccinations in 16 counties of SC to 552 participants, 243 of whom received HPV vaccinations and were predominantly female (57.2%), aged 4-18 (95.9%), and self-identified as White (44.0%), Black (33.2%), or Hispanic/Latino (15.1%). Most had Medicaid (53.1%)/no insurance coverage (25.1%). The Program is expected to expand as the Program's relationship with SC's school districts grows. The Program provides a model for delivering mobile HPV vaccinations to rural children, thus reducing their cancer risk.
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The annual National Conference on Health Disparities (NCHD) was launched in 2000. It unites health professionals, researchers, community leaders, and government officials, and is a catalyzing force in developing policies, research interventions, and programs that address prevention, social determinants, health disparities, and health equity. The NCHD Student Research Forum (SRF) was established in 2011 at the Medical University of South Carolina to build high-quality biomedical research presentation capacity in primarily underrepresented undergraduate and graduate/professional students. This paper describes the unique research training and professional development aspects of the NCHD SRF. These include guidance in abstract development, a webinar on presentation techniques and methods, a vibrant student-centric conference, and professional development workshops on finding a mentor and locating scholarship/fellowship funding, networking, and strategies for handling ethical issues in research with mentors. Between 2011 and 2018, 400 undergraduate and graduate/professional students participated in the NCHD SRF. Most students were women (80.5%). Approximately half were African American or black (52.3%), 18.0% were white, and 21.3% were of Hispanic/Latinx ethnicity. The NCHD SRF is unique in several ways. First, it provides detailed instructions on developing a scientific abstract, including content area examples. Second, it establishes a mandatory pre-conference training webinar demonstrating how to prepare a scientific poster. Third, it works with the research mentors, faculty advisors, department chairs, and deans to help identify potential sources of travel funding for students with accepted abstracts. These features make the NCHD SRF different from many other conferences focused on students' scientific presentations.
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Investigación Biomédica , Estudiantes , Humanos , Femenino , Masculino , Mentores , Investigación Biomédica/educación , Etnicidad , DocentesRESUMEN
OBJECTIVE: To examine the impact of race/ethnicity on timing and postoperative outcomes of primary cleft lip (CL) and cleft palate (CP) repair. DESIGN: Cross-sectional analysis of the National Surgical Quality Improvement Program Pediatric (NSQIP-P) database from 2013 to 2018. PATIENTS AND MAIN OUTCOME MEASURES: Patients under 2 years of age who underwent primary CL or CP repair were identified in the NSQIP-P. Outcomes were the timing of surgery and 30-day readmission and reoperation rates stratified by race and ethnicity. RESULTS: In total, 6021 children underwent CL and 6938 underwent CP repair. Adjusted rates of CL repair over time were 10% lower in Hispanic children (95%CI: 0.84-0.96) and 38% lower for Asian children (95%CI: 0.55-0.70) compared with White infants. CP repair rates over time were 13% lower in Black (95%CI: 0.79-0.95), 17% lower in Hispanic (95%CI: 0.77-0.89), and 53% lower in Asian children (95%CI: 0.43-0.53) than in White infants. Asian patients had the highest rates of delayed surgical repair, with 19.3% not meeting American Cleft Palate-Craniofacial Association (ACPA) guidelines for CL (P < .001) and 28.2% for CP repair (P< .001). Black and Hispanic children had 80% higher odds of readmission following primary CL repair (95%CI: 1.16-2.83 and 95%CI: 1.27-2.61, respectively). CONCLUSIONS: This study of a national database identified several racial/ethnic disparities in primary CL and CP, with reduced receipt of cleft repair over time for non-White children. Asian patients were significantly more likely to have delayed cleft repair per ACPA guidelines. These findings underscore the need to better understand disparities in cleft repair timing and postoperative outcomes.
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Labio Leporino , Fisura del Paladar , Lactante , Humanos , Niño , Estados Unidos , Fisura del Paladar/cirugía , Labio Leporino/cirugía , Estudios Transversales , Reoperación , Complicaciones Posoperatorias/cirugíaRESUMEN
This paper presents reflections on mentorship from scientists and mentors of the National Institute on Aging (NIA)-funded Carolina Center on Alzheimer's Disease and Minority Research (CCADMR). Using a network approach to mentoring, this program aims to increase the pipeline of underrepresented minority (URM) scientists studying Alzheimer's disease (AD) disparities. Six mentors and five scientists participated in interviews. Thematic analysis identified recurring themes; transcripts of mentors and scientists were compared. Most common thematic categories identified by mentors included experience interacting with scientists, goals as a mentor, recruitment of underrepresented minorities, scientists' challenges, and programmatic qualities. The most mentioned categories by scientists were challenges, seminars, working with mentors, career development, and project experience. The CCADMR will use findings to enhance the experience and training methods for future grant years. Results can benefit other training programs focused on aging and AD.
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Enfermedad de Alzheimer , Tutoría , Médicos , Enfermedad de Alzheimer/terapia , Humanos , Mentores , Grupos MinoritariosRESUMEN
OBJECTIVE: We aim to investigate the impact of neighborhood-level social vulnerability on otolaryngology care for children with obstructive sleep-disordered breathing (SDB). STUDY DESIGN: Retrospective cohort study. SETTING: A tertiary children's hospital. METHODS: Children aged 2 to 17 years with SDB were included. Residential addresses were geocoded with geographic information systems, and spatial overlays were used to assign census tract-level social vulnerability index (SVI) scores to each participant. Multivariable logistic regression models were used to estimate associations of neighborhood SVI scores and individual factors with attendance of otolaryngology referral appointment and interventions. RESULTS: The study included 397 patients (mean ± SD age, 5.9 ± 3.7 years; 51% male, n = 203). After adjustment for age and sex, children with higher overall SVI scores (odds ratio [OR], 0.40; 95% CI, 0.16-0.92) and higher socioeconomic vulnerability scores (OR, 0.34; 95% CI, 0.14-0.86) were less likely to attend their referral appointments. The odds of attending referrals were 83% lower (OR, 0.17; 95% CI, 0.09-0.34) for Black children and 73% lower (OR, 0.27; 95% CI, 0.11-0.65) for Hispanic children than for non-Hispanic White children. Medicaid beneficiaries had lower odds of attending their referrals (OR, 0.20; 95% CI, 0.08-0.48) than privately insured children. Overall SVI score was not associated with receiving recommended polysomnography or tonsillectomy. CONCLUSION: In our study, children living in areas of greater social vulnerability were less likely to attend their otolaryngology referral appointments for SDB evaluation, as were children of Black race, Hispanic ethnicity, and Medicaid beneficiaries. These results suggest that neighborhood conditions, as well as patient-level factors, influence patient access to SDB care.
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Síndromes de la Apnea del Sueño , Tonsilectomía , Niño , Preescolar , Femenino , Humanos , Masculino , Polisomnografía , Estudios Retrospectivos , Síndromes de la Apnea del Sueño/cirugía , Vulnerabilidad Social , Tonsilectomía/métodosRESUMEN
OBJECTIVE: To assess the impact of rural-urban residence on children with obstructive sleep-disordered breathing (SDB) who were candidates for tonsillectomy with or without adenoidectomy (TA). STUDY DESIGN: Retrospective cohort study. SETTING: Tertiary children's hospital. METHODS: A cohort of otherwise healthy children aged 2 to 18 years with a diagnosis of obstructive SDB between April 2016 and December 2018 who were recommended TA were included. Rural-urban designation was defined by ZIP code approximation of rural-urban commuting area codes. The main outcome was association of rurality with time to TA and loss to follow-up using Cox and logistic regression analyses. RESULTS: In total, 213 patients were included (mean age 6 ± 2.9 years, 117 [55%] male, 69 [32%] rural dwelling). Rural-dwelling children were more often insured by Medicaid than private insurance (P < .001) and had a median driving distance of 74.8 vs 16.8 miles (P < .001) compared to urban-dwelling patients. The majority (94.9%) eventually underwent recommended TA once evaluated by an otolaryngologist. Multivariable logistic regression analysis did not reveal any significant predictors for loss to follow-up in receiving TA. Cox regression analysis that adjusted for age, sex, insurance, and race showed that rural-dwelling patients had a 30% reduction in receipt of TA over time as compared to urban-dwelling patients (hazard ratio, 0.7; 95% CI, 0.50-0.99). CONCLUSION: Rural-dwelling patients experienced longer wait times and driving distance to TA. This study suggests that rurality should be considered a potential barrier to surgical intervention and highlights the need to further investigate geographic access as an important determinant of care in pediatric SDB.
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Síndromes de la Apnea del Sueño , Apnea Obstructiva del Sueño , Tonsilectomía , Adenoidectomía , Niño , Preescolar , Femenino , Humanos , Masculino , Estudios Retrospectivos , Síndromes de la Apnea del Sueño/diagnóstico , Síndromes de la Apnea del Sueño/cirugía , Apnea Obstructiva del Sueño/cirugíaRESUMEN
Human papillomavirus (HPV) vaccination prevents 6 HPV-related cancers in men and women. Yet, rates of HPV vaccination among adolescents in the United States lag behind other developed nations, revealing a significant public health issue. This feasibility study tested a collaborative online learning environment to cultivate HPV vaccination champions. A 3-month training program recruited parents to serve as proponents and social media influencers to identify solutions to overcome barriers to HPV vaccination. A mixed methods study design included a pretest survey, three online asynchronous focus groups, a posttest survey, as well as a longitudinal follow-up survey at 6 months. Participants included 22 parents who self-identified as female (95.4%) and white (90.9%). Overall, there was a statistically significant difference in knowledge of HPV and HPV vaccination between pretest and posttest (p = 0.0042). This technology-mediated intervention increased parents' confidence and motivated them to speak more freely about HPV vaccination in-person and online with others in their social networks. Participants identified prevalent misinformation about HPV vaccination and learned how to effectively craft messages to address concerns related to safety and side effects, gender, understanding of risk, and sexual activity. Objective measures and qualitative open-ended assessment showed high intervention engagement and treatment satisfaction. All participants (100%) indicated that they enjoyed participating in the intervention. The effectiveness of this feasibility study suggests that social media is an appropriate platform to empower parents to counter vaccine hesitancy and misinformation through HPV vaccination information that is simple and shareable in-person and online.
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While extensive literature exists on barriers and strategies to increase minority participation in clinical trials, progress is limited. Few strategies were evaluated in randomized trials. We studied the impact of RECRUIT, a trust-based, cluster randomized minority recruitment trial layered on top of four traditional NIH-funded parent trials (BMT CTN, CABANA, PACES, STEADY-PD III; fifty specialty sites). RECRUIT was conducted from July 2013 through April 2017. Intervention sites implemented trust-based approaches customized to individual sites, promoting relationships between physician-investigators and minority-serving physicians and their minority patients. Control sites implemented only parent trials' recruitment procedures. Adjusting for within-site clustering, we detected no overall intervention effect, odds ratio 1.3 (95% confidence limits 0.7,2.4). Heterogeneity among parent trials may have obscured the effect. Of the four parent trials, three enrolled more minorities in intervention versus control sites. CABANA odds ratio = 4.2 (adjusted 95%CL 1.5,11.3). PACES intervention sites enrolled 63% (10/16) minorities; control sites enrolled one participant in total, a minority, yielding an incalculable odds ratio. STEADY-PD III odds ratio = 2.2 (adjusted 95%CL 0.6,8.5). BMT CTN odds ratio < 1, 0.8 (adjusted 95%CL 0.4,1.8). In conclusion, RECRUIT findings suggest the unique trust-based intervention increased minority recruitment to intervention trials in ¾ of studied trials. Physician-investigators' participation was critical to recruitment success. Lack of commitment to minority recruitment remained a barrier for some physician-investigators, especially in control sites. We recommend prospective physician investigators commit to minority recruitment activities prior to selection as site investigators and trial funding include some compensation for minority recruitment efforts. TRIAL REGISTRATION ClinicalTrials.govNCT01911208.
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Grupos Minoritarios , Confianza , Humanos , Selección de Paciente , Proyectos Piloto , Estudios ProspectivosRESUMEN
Alzheimer's disease and related dementias (ADRD) are at the forefront of the United States (US) public health agenda due to their tremendous human and financial burden. Further, disproportionately high ADRD rates among racial/ethnic minorities require incorporating the unique perspectives of racially and ethnically diverse scientists, which will necessitate diversifying the scientific workforce that investigates disparities in aging. The purpose of this paper is to describe the training and mentorship initiatives of the National Institute on Aging (NIA)-funded Carolina Center on Alzheimer's Disease and Minority Research, emphasizing lessons learned from our engagement with underrepresented minority and minoritized (URM) Scientists. We highlight three aims of the Center's training and mentorship component: (1) Fund pilot projects for URM Scientists conducting research on sociocultural, behavioral, and environmental factors that influence ADRD-related health disparities; (2) Provide mentorship to build the research capacity of Center Scientists; and (3) Offer research education in Health Disparities and Minority Aging Research to Center Scientists and interested researchers at all partner institutions. Our experience may be a practical resource for others developing interdisciplinary training programs to increase the pipeline of URM Scientists conducting ADRD research.
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Enfermedad de Alzheimer , Investigación Biomédica , Enfermedad de Alzheimer/terapia , Humanos , Mentores , Grupos Minoritarios , InvestigadoresRESUMEN
Insurance status is a known determinant of cancer stage at diagnosis and outcome. However, insurance status can change over the course of the disease and its treatment, complicating causal analysis. Cancer registries strive to capture the insurance status of patients at diagnosis, but this is not always possible. Breast cancer poses a particular challenge for this effort, as uninsured patients become eligible for Medicaid upon the diagnosis. Thus, their insurance status may have changed from uninsured to Medicaid by the time registrars interact with treatment records. We addressed this potential blurring between categories by working with a sample of patients identified through the cancer registry of the Medical University of South Carolina to focus on determining insurance status at diagnosis whenever possible. We found that the uninsured population (32 women) was larger than the Medicaid-covered population (22 women) in a sample of patients in South Carolina, a state that did not accept the Medicaid expansion. Compared with women who carried any type of insurance, uninsured women were much more likely to find their own breast mass through palpation rather than through screening, they were diagnosed with a later stage of breast cancer at diagnosis, and their outcomes were worse. Insured women experienced significantly increased survival odds (odds ratio, 3.28) and multiple regression analysis demonstrated that the higher stages seen in uninsured women largely accounted for the poorer outcomes. These findings suggest that more research is needed to define the characteristics and disease courses unique to the breast cancer population lacking insurance prior to diagnosis.
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OBJECTIVE: To determine the impact of race and ethnicity on 30-day complications following pediatric endoscopic sinus surgery (ESS). STUDY DESIGN: Cross-sectional cohort study. SUBJECTS AND METHODS: Patients ≤ 18 years of age undergoing ESS from 2015 to 2017 were identified in the Pediatric National Surgical Improvement Program-Pediatric database. Patient demographics, comorbidities, surgical indication, and postoperative complications were extracted. Patient race/ethnicity included non-Hispanic black, non-Hispanic white, Hispanic, and other. Multivariable logistic regression was performed to determine if race/ethnicity was a predictor of postoperative complications after ESS. RESULTS: A total of 4,337 patients were included in the study. The median age was 10.9 (interquartile range: 14.5-6.7) years. The cohort was comprised of 68.3% non-Hispanic white, 13.9% non-Hispanic black, 9.7% Hispanic, and 2.1% other. The 30-day complication rate was 3.2%, and the mortality rate was 0.3%. The rate of reoperation was 3.8%, and readmission was 4.1%. Black and Hispanic patients had higher rates of urgent operations (P = .003 and P < .001, respectively), and black patients had a higher incidence of emergent operations (P < .001) compared to their white peers. For elective ESS cases, multivariable analysis adjusting for sex, age, comorbidities, and surgical indication indicated that children of Hispanic ethnicity had increased postoperative complications (odds ratio: 1.57, 95% confidence interval: 1.04-2.37). CONCLUSION: This analysis demonstrated that black and Hispanic children disproportionately undergo more urgent and emergent ESS. Hispanic ethnicity was associated with increased 30-day complications following elective pediatric ESS. Further studies are needed to elucidate potential causes of these disparities and identify areas for improvement. LEVEL OF EVIDENCE: 3 Laryngoscope, 131:E1369-E1374, 2021.
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Endoscopía/métodos , Procedimientos Quírurgicos Nasales/efectos adversos , Senos Paranasales/cirugía , Racismo/etnología , Adolescente , Negro o Afroamericano , Niño , Preescolar , Comorbilidad , Estudios Transversales , Procedimientos Quirúrgicos Electivos/efectos adversos , Procedimientos Quirúrgicos Electivos/estadística & datos numéricos , Endoscopía/estadística & datos numéricos , Etnicidad , Femenino , Hispánicos o Latinos , Humanos , Modelos Logísticos , Masculino , Evaluación de Resultado en la Atención de Salud , Complicaciones Posoperatorias/epidemiología , Complicaciones Posoperatorias/etnología , Reoperación/estadística & datos numéricos , Población BlancaRESUMEN
Background: There are well-documented disparities in lung cancer outcomes across populations. Lung cancer screening (LCS) has the potential to reduce lung cancer mortality, but for this benefit to be realized by all high-risk groups, there must be careful attention to ensuring equitable access to this lifesaving preventive health measure.Objectives: To outline current knowledge on disparities in eligibility criteria for, access to, and implementation of LCS, and to develop an official American Thoracic Society statement to propose strategies to optimize current screening guidelines and resource allocation for equitable LCS implementation and dissemination.Methods: A multidisciplinary panel with expertise in LCS, implementation science, primary care, pulmonology, health behavior, smoking cessation, epidemiology, and disparities research was convened. Participants reviewed available literature on historical disparities in cancer screening and emerging evidence of disparities in LCS.Results: Existing LCS guidelines do not consider racial, ethnic, socioeconomic, and sex-based differences in smoking behaviors or lung cancer risk. Multiple barriers, including access to screening and cost, further contribute to the inequities in implementation and dissemination of LCS.Conclusions: This statement identifies the impact of LCS eligibility criteria on vulnerable populations who are at increased risk of lung cancer but do not meet eligibility criteria for screening, as well as multiple barriers that contribute to disparities in LCS implementation. Strategies to improve the selection and dissemination of LCS in vulnerable groups are described.
Asunto(s)
Toma de Decisiones Conjunta , Detección Precoz del Cáncer/estadística & datos numéricos , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Disparidades en Atención de Salud/etnología , Neoplasias Pulmonares/diagnóstico , Fumar/etnología , Determinación de la Elegibilidad , Etnicidad/estadística & datos numéricos , Costos de la Atención en Salud , Disparidades en Atención de Salud/estadística & datos numéricos , Humanos , Ciencia de la Implementación , Cobertura del Seguro , Comercialización de los Servicios de Salud/métodos , Medicaid , Pacientes no Asegurados/estadística & datos numéricos , Grupos Minoritarios/estadística & datos numéricos , Guías de Práctica Clínica como Asunto , Derivación y Consulta/estadística & datos numéricos , Factores Sexuales , Fumar/epidemiología , Fumar/terapia , Cese del Hábito de Fumar/estadística & datos numéricos , Clase Social , Estados UnidosRESUMEN
BACKGROUND: Current clinical guidelines recommend that hormone receptor-positive breast cancer survivors take adjuvant hormonal therapy (AHT) for 5 to 10 years, following the end of definitive treatment. However, fewer than half of patients adhere to the guidelines, and suboptimal adherence to AHT is associated with an increased risk of breast cancer mortality. Research has extensively documented sociodemographic and disease-specific factors associated with adherence to AHT, but very little evidence exists on behavioral factors (eg, knowledge, patient-provider communication) that can be modified and targeted by interventions. OBJECTIVE: The goal of this study is to develop and test a theory-based, multilevel intervention to improve adherence to AHT among breast cancer survivors from racially and socioeconomically disadvantaged backgrounds (eg, Medicaid-insured). The specific aims are to (1) explore multilevel (eg, patient, health care system) factors that influence adherence to AHT; (2) develop a theory-based, multilevel intervention to improve adherence to AHT; and (3) pilot test and evaluate the intervention developed in Aim 2. METHODS: For Aim 1, we will recruit breast cancer survivors and health care professionals to participate in semistructured interviews to gain their perspectives about barriers and facilitators to AHT use. We will conduct a directed content analysis of the Aim 1 qualitative interview data. For Aim 2, we will integrate Aim 1 findings and current literature into the design of a multilevel intervention using an Intervention Mapping approach. For Aim 3, we will recruit Medicaid-insured breast cancer survivors to assess the feasibility of the pilot intervention. RESULTS: From May 2016 to July 2018, we completed interviews with 19 breast cancer survivors and 23 health care professionals in South Carolina. We will conduct a directed content analysis of the qualitative interview data. Results from this analysis will be used, in combination with current literature, to design (Aim 2) and pilot test a theory-based multilevel intervention (Aim 3) in Summer 2021. Results of the pilot are expected for Fall 2021. CONCLUSIONS: This study will provide a deeper understanding of how to improve adherence to AHT, using a novel and multilevel approach, among socioeconomically disadvantaged breast cancer survivors who often experience disproportionate breast cancer mortality. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/17742.