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BACKGROUND: Aligned with the NCCN Clinical Practice Guidelines in Oncology for Head and Neck Cancers, in November 2021 the Commission on Cancer approved initiation of postoperative radiation therapy (PORT) within 6 weeks of surgery for head and neck cancer (HNC) as its first and only HNC quality metric. Unfortunately, >50% of patients do not commence PORT within 6 weeks, and delays disproportionately burden racial and ethnic minority groups. Although patient navigation (PN) is a potential strategy to improve the delivery of timely, equitable, guideline-adherent PORT, the national landscape of PN for this aspect of care is unknown. MATERIALS AND METHODS: From September through November 2022, we conducted a survey of health care organizations that participate in the American Cancer Society National Navigation Roundtable to understand the scope of PN for delivering timely, guideline-adherent PORT for patients with HNC. RESULTS: Of the 94 institutions that completed the survey, 89.4% (n=84) reported that at least part of their practice was dedicated to navigating patients with HNC. Sixty-eight percent of the institutions who reported navigating patients with HNC along the continuum (56/83) reported helping them begin PORT. One-third of HNC navigators (32.5%; 27/83) reported tracking the metric for time-to-PORT at their facility. When estimating the timeframe in which the NCCN and Commission on Cancer guidelines recommend commencing PORT, 44.0% (37/84) of HNC navigators correctly stated ≤6 weeks; 71.4% (60/84) reported that they did not know the frequency of delays starting PORT among patients with HNC nationally, and 63.1% (53/84) did not know the frequency of delays at their institution. CONCLUSIONS: In this national landscape survey, we identified that PN is already widely used in clinical practice to help patients with HNC start timely, guideline-adherent PORT. To enhance and scale PN within this area and improve the quality and equity of HNC care delivery, organizations could focus on providing better education and support for their navigators as well as specialization in HNC.
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Neoplasias de Cabeça e Pescoço , Navegação de Pacientes , Humanos , Etnicidade , Grupos Minoritários , Neoplasias de Cabeça e Pescoço/terapia , Terapia CombinadaRESUMO
INTRODUCTION: The Florida-California Cancer Research, Education, and Engagement (CaRE2) Health Equity Center is a triad partnership committed to increasing institutional capacity for cancer disparity research, the diversity of the cancer workforce, and community empowerment. This article provides an overview of the structure, process innovations, and initial outcomes from the first 4 years of the CaRE2 triad partnership. METHODS: CaRE2 serves diverse populations in Florida and California using a "molecule to the community and back" model. We prioritize research on the complex intersection of biological, environmental, and social determinants health, working together with scientific and health disparities communities, sharing expertise across institutions, bidirectional training, and community outreach. Partnership progress and outcomes were assessed using mixed methods and four Program Steering Committee meetings. RESULTS: Research capacity was increased through development of a Living Repository of 81 cancer model systems from minority patients for novel cancer drug development. CaRE2 funded 15 scientific projects resulting in 38 publications. Workforce diversity entailed supporting 94 cancer trainees (92 URM) and 34 ESIs (32 URM) who coauthored 313 CaRE2-related publications and received 48 grants. Community empowerment was promoted via outreaching to more than 3000 individuals, training 145 community cancer advocates (including 28 Community Scientist Advocates), and publishing 10 community reports. CaRE2 members and trainees together have published 639 articles, received 61 grants, and 57 awards. CONCLUSION: The CaRE2 partnership has achieved its initial aims. Infrastructure for translational cancer research was expanded at one partner institution, and cancer disparities research was expanded at the two cancer centers.
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Equidade em Saúde , Neoplasias , Humanos , California , Florida , Grupos Minoritários , Neoplasias/terapiaRESUMO
As precision medicine becomes a mainstay in health care, the use of health information technology (IT) platforms will play an important role in the delivery of services across the cancer care continuum. Currently, there is both limited understanding about perceptions of health IT tools and barriers to their use among cancer genetic counselors. We assessed open-ended responses from a survey conducted among 128 board-certified cancer genetic counselors in the United States. We evaluated the utility of ten health IT tools and perceived barriers to adoption. Responses about characteristics of health IT tools that influence current use (i.e., technology-specific challenges) were deductively analyzed using the diffusion of innovations (DOI) characteristics. Responses about cancer genetic counselors' perceived challenges to adopting health IT tools (i.e., discipline-specific challenges) were inductively coded using a thematic approach. DOI innovation characteristics included mixed perceptions about the relative advantage, complexity, compatibility, trialability, and observability of tools based on the type of tool and perceived end-user. One-third of participants indicated that they were considering adopting or switching health IT tools. Common barriers to adoption included no perceived need for change, lack of organizational infrastructure, cost, and lack of decision-making power. Our findings indicate that addressing barriers to use and adoption of health IT may allow for expansion of these tools among cancer genetic counselors. Integrating health IT is critical for enhancing cancer genetic counselors' capacity to address patient needs and realizing the potential of precision medicine.
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Conselheiros , Informática Médica , Neoplasias , Aconselhamento Genético , Humanos , Neoplasias/genética , Inquéritos e Questionários , Estados UnidosRESUMO
BACKGROUND: The emergence of reactive stroma is a hallmark of prostate cancer (PCa) progression and a potential source for prognostic and diagnostic markers of PCa. Collagen is a main component of reactive stroma and changes systematically and quantitatively to reflect the course of PCa, yet has remained undefined due to a lack of tools that can define collagen protein structure. Here we use a novel collagen-targeting proteomics approach to investigate zonal regulation of collagen-type proteins in PCa prostatectomies. METHODS: Prostatectomies from nine patients were divided into zones containing 0%, 5%, 20%, 70% to 80% glandular tissue and 0%, 5%, 25%, 70% by mass of PCa tumor following the McNeal model. Tissue sections from zones were graded by a pathologist for Gleason score, percent tumor present, percent prostatic intraepithelial neoplasia and/or inflammation (INF). High-resolution accurate mass collagen targeting proteomics was done on a select subset of tissue sections from patient-matched tumor or nontumor zones. Imaging mass spectrometry was used to investigate collagen-type regulation corresponding to pathologist-defined regions. RESULTS: Complex collagen proteomes were detected from all zones. COL17A and COL27A increased in zones of INF compared with zones with tumor present. COL3A1, COL4A5, and COL8A2 consistently increased in zones with tumor content, independent of tumor size. Collagen hydroxylation of proline (HYP) was altered in tumor zones compared with zones with INF and no tumor. COL3A1 and COL5A1 showed significant changes in HYP peptide ratios within tumor compared with zones of INF (2.59 ± 0.29, P value: .015; 3.75 ± 0.96 P value .036, respectively). By imaging mass spectrometry COL3A1 showed defined localization and regulation to tumor pathology. COL1A1 and COL1A2 showed gradient regulation corresponding to PCa pathology across zones. Pathologist-defined tumor regions showed significant increases in COL1A1 HYP modifications compared with COL1A2 HYP modifications. Certain COL1A1 and COL1A2 peptides could discriminate between pathologist-defined tumor and inflammatory regions. CONCLUSIONS: Site-specific posttranslational regulation of collagen structure by proline hydroxylation may be involved in reactive stroma associated with PCa progression. Translational and posttranslational regulation of collagen protein structure has potential for new markers to understand PCa progression and outcomes.
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Colágeno/metabolismo , Neoplasias da Próstata/metabolismo , Neoplasias da Próstata/patologia , Processamento de Proteína Pós-Traducional , Idoso , Sequência de Aminoácidos , Autoantígenos , Colágeno Tipo I/metabolismo , Cadeia alfa 1 do Colágeno Tipo I , Colágeno Tipo III/metabolismo , Colágeno Tipo IV/metabolismo , Colágeno Tipo VIII/metabolismo , Progressão da Doença , Colágenos Fibrilares/metabolismo , Humanos , Hidroxilação , Masculino , Pessoa de Meia-Idade , Proteínas de Neoplasias/metabolismo , Colágenos não Fibrilares , Prolina/metabolismo , Próstata/metabolismo , Prostatectomia , Neoplasias da Próstata/diagnóstico por imagem , Proteômica/métodos , Espectrometria de Massas por Ionização e Dessorção a Laser Assistida por Matriz/métodos , Espectroscopia de Infravermelho com Transformada de Fourier/métodos , Colágeno Tipo XVIIRESUMO
BACKGROUND: Black women are overrepresented among premenopausal breast cancer (BC) survivors. These patients warrant genetic testing (GT) followed by risk-reducing behaviors. This study documented patterns and predictors of cancer risk-management behaviors among young black BC survivors after GT. METHODS: Black women (n = 143) with a diagnosis of BC at the age of 50 years or younger received GT. At 1 year after GT, participants reported receipt of risk-reducing mastectomy, risk-reducing salpingo-oophorectomy, mammogram, breast magnetic resonance imaging (MRI), CA125 test, and transvaginal/pelvic ultrasound. Logistic regression was used to examine predictors of BC risk management (risk-reducing mastectomy or breast MRI) and ovarian cancer risk management (risk-reducing salpingo-oophorectomy, CA125 test, or transvaginal/pelvic ultrasound). RESULTS: Of the study participants, 16 (11%) were BRCA1/2-positive, 43 (30%) had a variant of uncertain significance, and 84 (59%) were negative. During the 12 months after GT, no women received risk-reducing mastectomy. The majority (93%) received a mammogram, and a smaller proportion received breast MRI (33%), risk-reducing salpingo-oophorectomy (10%), CA125 test (11%), or transvaginal/pelvic ultrasound (34%). Longer time since the BC diagnosis predicted lower likelihood of BC risk management (odds ratio [OR] 0.54). BRCA1/2 carrier status (OR 4.57), greater perceived risk of recurrence (OR 8.03), and more hereditary breast and ovarian cancer knowledge (OR 1.37) predicted greater likelihood of ovarian cancer risk management. CONCLUSIONS: Young black BC survivors appropriately received mammograms and ovarian cancer risk management based on their BRCA1/2 test result. However, the low usage of MRI among BRCA1/2 carriers contrasts with national guidelines. Future research should examine barriers to MRI among black BC survivors. Finally, modifiable variables predicting risk management after GT were identified, providing implications for future interventions.
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Neoplasias da Mama/etnologia , Testes Genéticos/estatística & dados numéricos , Mastectomia/estatística & dados numéricos , Neoplasias Ovarianas/etnologia , Neoplasias Ovarianas/prevenção & controle , Salpingo-Ooforectomia/estatística & dados numéricos , Adulto , Negro ou Afro-Americano/estatística & dados numéricos , Neoplasias da Mama/genética , Neoplasias da Mama/mortalidade , Antígeno Ca-125 , Sobreviventes de Câncer , Feminino , Genes BRCA1 , Genes BRCA2 , Predisposição Genética para Doença , Humanos , Modelos Logísticos , Estudos Longitudinais , Imageamento por Ressonância Magnética , Pessoa de Meia-Idade , Mutação , Neoplasias Ovarianas/genética , Medição de Risco , Estados Unidos/epidemiologiaRESUMO
Despite higher incidence and mortality of breast cancer among younger Black women, genetic testing outcomes remain severely understudied among Blacks. Past research on disclosure of genetic testing results to family members has disproportionately focused on White, educated, high socioeconomic status women. This study addresses this gap in knowledge by assessing (a) to whom Black women disclose genetic test results and (b) if patterns of disclosure vary based on test result (e.g., BRCA1/2 positive, negative, variant of uncertain significance [VUS]). Black women (N = 149) with invasive breast cancer diagnosed age ≤50 years from 2009 to 2012 received free genetic testing through a prospective, population-based study. At 12 months post-testing, women reported with whom they shared their genetic test results. The exact test by binomial distribution was used to examine whether disclosure to female relatives was significantly greater than disclosure to male relatives, and logistic regression analyses tested for differences in disclosure to any female relative, any male relative, parents, siblings, children, and spouses by genetic test result. Most (77%) women disclosed their results to at least one family member. Disclosure to female relatives was significantly greater than disclosure to males (p < .001). Compared to those who tested negative or had a VUS, BRCA1/2-positive women were significantly less likely to disclose results to their daughters (ORBRCApositive = 0.25, 95% CI = 0.07-0.94, p = .041) by 12 months post-genetic testing. Genetic test result did not predict any other type of disclosure (all ps > 0.12). Results suggest that in Black families, one benefit of genetic testing-to inform patients and their family about cancer risk information-is not being realized. To increase breast cancer preventive care among high-risk Black women, the oncology care team should prepare Black BRCA1/2-positive women to share genetic test results with family members and, in particular, their daughters.
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Negro ou Afro-Americano/genética , Neoplasias da Mama/genética , Família , Invasividade Neoplásica/genética , Revelação da Verdade , Adulto , Neoplasias da Mama/patologia , Criança , Revelação , Feminino , Genes BRCA1 , Genes BRCA2 , Testes Genéticos/métodos , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
BACKGROUND: Patients who travel a long distance (≥50 miles) for cancer care have improved outcomes. However, to the authors' knowledge, the prevalence of long travel distances for treatment by patients with head and neck squamous cell carcinoma (HNSCC), and the effect of travel distance on overall survival (OS), remains unknown. METHODS: The authors used the National Cancer Data base from 2004 through 2013 to identify patients with HNSCC undergoing definitive treatment. Travel distance for treatment was categorized as short (<12.5 miles), intermediate (12.5-49.9 miles), and long (50-249.9 miles). The primary outcome, OS, was evaluated using Cox shared-frailty modeling. A secondary outcome, factors associated with intermediate and long travel distances, was evaluated using multivariable hierarchical logistic regression. RESULTS: Among 118,000 patients with HNSCC, 62,753 (53.2%), 40,644 (34.4%), and 14,603 (12.4%) patients, respectively, traveled short, intermediate, and long distances for treatment. After adjusting for relevant covariates, long travel distance was associated with treatment at academic and high-volume centers. Patients of black race, of Hispanic ethnicity, with Medicaid insurance, and who were treated with nonsurgical treatment were less likely to travel long distances for treatment (P<.001). Traveling a long distance for treatment was associated with improved OS on multivariable analysis (adjusted hazard ratio, 0.93; 95% confidence interval, 0.89-0.96) compared with a short distance. CONCLUSIONS: Traveling a long distance for HNSCC treatment is associated with improved survival, especially for patients receiving nonsurgical management. Racial and ethnic disparities in travel for HNSCC treatment exist. As regionalization of care continues, future work should identify and address reasons for racial and ethnic disparities in travel that may prevent access to care at high-volume facilities. Cancer 2018;000:000-000. © 2018 American Cancer Society.
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Serviços de Saúde , Carcinoma de Células Escamosas de Cabeça e Pescoço/epidemiologia , Análise de Sobrevida , Viagem , Adulto , Idoso , População Negra , Etnicidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Modelos de Riscos Proporcionais , Qualidade da Assistência à Saúde , Fatores Raciais , Carcinoma de Células Escamosas de Cabeça e Pescoço/patologia , Carcinoma de Células Escamosas de Cabeça e Pescoço/terapia , População BrancaRESUMO
OBJECTIVE: Prior studies demonstrating minimal psychological consequences for women receiving genetic counseling/genetic testing (GC/GT) for hereditary breast and ovarian cancer rely on predominantly Caucasian women. We conducted a prospective follow-up of a subset of participants from a population-based study of Black breast cancer (BC) survivors receiving GC/GT for BRCA1 and BRCA2 mutations. METHODS: Black women with invasive BC at age ≤ 50 years diagnosed between 2009 and 2012 were recruited through the Florida Cancer Registry. Participants (n = 215, age M = 44.7, SD = 6.2) were offered telephone pre- and post-test GC, a subset completed questionnaires assessing sociodemographic, clinical, and psychosocial variables. RESULTS: There were no baseline differences in cancer-related distress, psychological distress, or quality of life between test result groups. Social well-being improved in women receiving negative results (P = .01), but no other outcomes demonstrated significant changes over time between groups. CONCLUSIONS: Our study is among the first to demonstrate minimal negative psychosocial outcomes following GC/GT among young Black BC survivors, irrespective of test results.
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Negro ou Afro-Americano/psicologia , Neoplasias da Mama/psicologia , Sobreviventes de Câncer/psicologia , Aconselhamento Genético/psicologia , Adulto , Proteína BRCA1 , Estudos de Coortes , Feminino , Florida , Testes Genéticos/métodos , Humanos , Pessoa de Meia-Idade , Estudos Prospectivos , Qualidade de Vida/psicologia , Inquéritos e QuestionáriosRESUMO
Family health history (FHx) is one of the most important pieces of information available to help genetic counselors and other clinicians identify risk and prevent disease. Unfortunately, the collection of FHx from patients is often too time consuming to be done during a clinical visit. Fortunately, there are many electronic FHx tools designed to help patients gather and organize their own FHx information prior to a clinic visit. We conducted a review and analysis of electronic FHx tools to better understand what tools are available, to compare and contrast to each other, to highlight features of various tools, and to provide a foundation for future evaluation and comparisons across FHx tools. Through our analysis, we included and abstracted 17 patient-facing electronic FHx tools and explored these tools around four axes: organization information, family history collection and display, clinical data collected, and clinical workflow integration. We found a large number of differences among FHx tools, with no two the same. This paper provides a useful review for health care providers, researchers, and patient advocates interested in understanding the differences among the available patient-facing electronic FHx tools.
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Registros Eletrônicos de Saúde , Anamnese , Feminino , Humanos , Fatores de RiscoRESUMO
We are in the midst of a technological revolution that is providing new insights into human biology and cancer. In this era of big data, we are amassing large amounts of information that is transforming how we approach cancer treatment and prevention. Enactment of the Cancer Moonshot within the 21st Century Cures Act in the USA arrived at a propitious moment in the advancement of knowledge, providing nearly US$2 billion of funding for cancer research and precision medicine. In 2016, the Blue Ribbon Panel (BRP) set out a roadmap of recommendations designed to exploit new advances in cancer diagnosis, prevention, and treatment. Those recommendations provided a high-level view of how to accelerate the conversion of new scientific discoveries into effective treatments and prevention for cancer. The US National Cancer Institute is already implementing some of those recommendations. As experts in the priority areas identified by the BRP, we bolster those recommendations to implement this important scientific roadmap. In this Commission, we examine the BRP recommendations in greater detail and expand the discussion to include additional priority areas, including surgical oncology, radiation oncology, imaging, health systems and health disparities, regulation and financing, population science, and oncopolicy. We prioritise areas of research in the USA that we believe would accelerate efforts to benefit patients with cancer. Finally, we hope the recommendations in this report will facilitate new international collaborations to further enhance global efforts in cancer control.
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Pesquisa Biomédica/tendências , Planejamento em Saúde/tendências , Prioridades em Saúde , National Cancer Institute (U.S.)/tendências , Neoplasias/terapia , Pesquisa Biomédica/métodos , Previsões , Humanos , Oncologia/tendências , Neoplasias/diagnóstico , Medicina de Precisão/tendências , Estados UnidosRESUMO
Prior research and systematic reviews have examined strategies related to weight management, less is known about lifestyle and behavioral counseling interventions optimally suited for implementation in primary care practices generally, and among racial and ethnic patient populations. Primary care practitioners may find it difficult to access and use available research findings on effective behavioral and lifestyle counseling strategies and to assess their effects on health behaviors among their patients. This systematic review compiled existing evidence from randomized trials to inform primary care providers about which lifestyle and behavioral change interventions are shown to be effective for changing patients' diet, physical activity and weight outcomes. Searches identified 444 abstracts from all sources (01/01/2004-05/15/2014). Duplicate abstracts were removed, selection criteria applied and dual abstractions conducted for 106 full text articles. As of June 12, 2015, 29 articles were retained for inclusion in the body of evidence. Randomized trials tested heterogeneous multi-component behavioral interventions for an equally wide array of outcomes in three population groups: diverse patient populations (23 studies), African American patients only (4 studies), and Hispanic/Mexican American/Latino patients only (2 studies). Significant and consistent findings among diverse populations showed that weight and physical activity related outcomes were more amenable to change via lifestyle and behavioral counseling interventions than those associated with diet modification. Evidence to support specific interventions for racial and ethnic minorities was promising, but insufficient based on the small number of studies.
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Aconselhamento/métodos , Etnicidade/psicologia , Estilo de Vida/etnologia , Atenção Primária à Saúde , Índice de Massa Corporal , Exercício Físico , Comportamentos Relacionados com a Saúde/etnologia , Humanos , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
Implementing behavioral interventions for cardiovascular risk reduction and weight management is challenging in primary care. Primary care patients and providers were recruited for qualitative interviews to identify priorities and preferences for addressing weight management. Thematic analysis was used to identify relevant resources, barriers to lifestyle modification, health behavior change, and implementation of weight management strategies into care. Patients and providers prioritized increasing physical activity and healthy diets when managing chronic disease; and reported decreased patient motivation, knowledge, and limited organizational capacity and time among providers to deliver intensive interventions. Providers and patients disagreed regarding who owns accountability for weight management.
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Manutenção do Peso Corporal/fisiologia , Doenças Cardiovasculares/prevenção & controle , Exercício Físico/fisiologia , Comportamentos Relacionados com a Saúde/fisiologia , Doenças Cardiovasculares/patologia , Doença Crônica , Humanos , Pessoa de Meia-Idade , Atenção Primária à Saúde , Fatores de Risco , Comportamento de Redução do RiscoRESUMO
RATIONALE: Black individuals with lung cancer (LC) experience higher mortality because they present with more advanced disease and are less likely to undergo curative resection for early-stage disease. The National Lung Screening Trial (NLST) demonstrated improved LC mortality by screening high-risk patients with low-dose computed tomography (LDCT). The benefit of LDCT screening in black individuals is unknown. OBJECTIVES: Examine results of the NLST by race. METHODS: This was a secondary analysis of a randomized trial (NCT00047385) performed in 33 U.S. centers. MEASUREMENTS AND MAIN RESULTS: Overall and lung cancer-specific mortality were measured. Screening with LDCT reduced LC mortality in all racial groups but more so in black individuals (hazard ratio [HR], 0.61 vs. 0.86). Smoking increased the likelihood of death from LC, and when stratified by race black smokers were twice as likely to die as white smokers (HR, 4.10 vs. 2.25). Adjusting for sociodemographic and behavioral characteristics, black individuals experienced higher all-cause mortality than white individuals (HR, 1.35; 95% confidence interval, 1.22-1.49); however, black individuals screened with LDCT had a reduction in all-cause mortality. Black individuals were younger, were more likely to be current smokers, had more comorbidities, and had fewer years of formal education than white individuals (P < 0.05). CONCLUSIONS: Black individuals screened with LDCT had decreased mortality from lung cancer. However, the demographics associated with improved LC survival were less commonly found in black individuals. The overall mortality in the NLST was higher for black individuals than white individuals, but improved in black individuals screened, suggesting that this subgroup may have had improved access to care. To realize the reductions in mortality from LC screening, dissemination efforts need to be tailored to meet the needs of this community.
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Negro ou Afro-Americano/estatística & dados numéricos , Neoplasias Pulmonares/diagnóstico por imagem , Neoplasias Pulmonares/etnologia , Neoplasias Pulmonares/epidemiologia , Programas de Rastreamento/estatística & dados numéricos , População Branca/estatística & dados numéricos , Feminino , Humanos , Pulmão/diagnóstico por imagem , Masculino , Programas de Rastreamento/métodos , Pessoa de Meia-Idade , Tomografia Computadorizada por Raios X , Estados Unidos/epidemiologiaRESUMO
BACKGROUND: Annually, nearly 3 million individuals in the US are hospitalized after experiencing a traumatic injury (e.g., serious automobile crash, gunshot wound, stab injury). Many traumatically injured patients experience a trajectory of resilience. However, 20-40 % develop mental health problems such as posttraumatic stress disorder and depression; population estimates exceed 600,000 patients annually. Most trauma centers do not provide direct services to address mental health recovery, but the 2022 American College of Surgeons guidelines have established this as a priority. Cost-effective interventions are needed that meet the needs of patients at each stage of the recovery process while achieving sustainability at the level of implementation. This protocol paper describes a study that rigorously tests the Trauma Resilience and Recovery Program (TRRP), a scalable, sustainable technology-enhanced intervention to support the mental health recovery of patients who have experienced a traumatic injury. METHODS: We describe a randomized controlled trial with 1-year follow up of TRRP vs. enhanced usual care with 350 traumatically injured patients, including recruitment and retention procedures, assessment, implementation and fidelity monitoring, and statistical plans. CONCLUSION: Novel components of our design include integration of technology-based elements, use of a stepped-care model, and implementation in a trauma center that did not previously have a mental health program. Data collected address the impact of TRRP and inform improvements to the model and its implementation in preparation for large-scale testing and implementation initiatives. This body of work is critical to informing the field as it continues to move toward national standards and recommendations. TRIAL REGISTRATION: NCT05497115Clinicaltrials.gov.
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OBJECTIVE: Family health history (FHx) is an important tool in assessing one's risk towards specific health conditions. However, user experience of FHx collection tools is rarely studied. ItRunsInMyFamily.com (ItRuns) was developed to assess FHx and hereditary cancer risk. This study reports a quantitative user experience analysis of ItRuns. METHODS: We conducted a public health campaign in November 2019 to promote FHx collection using ItRuns. We used software telemetry to quantify abandonment and time spent on ItRuns to identify user behaviors and potential areas of improvement. RESULTS: Of 11,065 users who started the ItRuns assessment, 4305 (38.91%) reached the final step to receive recommendations about hereditary cancer risk. Highest abandonment rates were during Introduction (32.82%), Invite Friends (29.03%), and Family Cancer History (12.03%) subflows. Median time to complete the assessment was 636 s. Users spent the highest median time on Proband Cancer History (124.00 s) and Family Cancer History (119.00 s) subflows. Search list questions took the longest to complete (median 19.50 s), followed by free text email input (15.00 s). CONCLUSION: Knowledge of objective user behaviors at a large scale and factors impacting optimal user experience will help enhance the ItRuns workflow and improve future FHx collection.
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Anamnese , Humanos , Anamnese/métodos , Anamnese/estatística & dados numéricos , Saúde da Família , Feminino , Masculino , Telemetria/métodos , SoftwareRESUMO
Racial differences in breast cancer morbidity and mortality have been examined between Black/African American women and White women as part of efforts to characterize multilevel drivers of disease risk and outcomes. Current models of cancer disparities recognize the significance of physiological stress responses, yet data on stress hormones in Black/African American women with breast cancer and their social risk factors are limited. We examined cortisol levels in Black/African American breast cancer patients and tested their association with social and clinical factors to understand the relationship between stress responses and women's lived experiences. Seventy-two patients who completed primary surgical treatment were included in this cross-sectional study. Data on sociodemographic characteristics and chronic diseases were obtained by self-report. Breast cancer stage and diagnosis date were abstracted from electronic health records. Cortisol levels were determined from saliva samples. Compared to those without hypertension, patients with hypertension were 6.84 (95% CI 1.33, 35.0) times as likely to have high cortisol (p = 0.02). The odds of having high cortisol increased by 1.42 (95% CI 1.03, 1.95, p = 0.03) times for every point increase in negative life events. Hypertension and negative life events are associated with high cortisol levels in Black/African American patients. These findings illustrate the importance of understanding the lived experiences of these patients to enhance cancer health equity.
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Negro ou Afro-Americano , Neoplasias da Mama , Sobreviventes de Câncer , Hidrocortisona , Estresse Psicológico , Humanos , Feminino , Neoplasias da Mama/etnologia , Negro ou Afro-Americano/psicologia , Pessoa de Meia-Idade , Hidrocortisona/metabolismo , Sobreviventes de Câncer/psicologia , Estudos Transversais , Idoso , Adulto , Saliva/metabolismo , Saliva/química , Fatores de Risco , HipertensãoRESUMO
Introduction: Many research activities have focused on SARS-CoV-2 infection and subsequent COVID-19 respiratory illness during the pandemic. However, significant racial inequities emerged months after the COVID-19 pandemic began. The similarity between racial/ ethnic disparities in COVID-19 and those for other diseases raised awareness about the context for risk exposure and healthcare access. The purpose of this study is to examine social and structural determinants of health among COVID-19 survivors, carepartners, and the perspectives of healthcare stakeholders who experienced disruption during the early pandemic. Material and methods: A purposive sample of interviews (n=9) and focus groups (n=10) were used to collect data regarding knowledge of barriers to effective COVID-19 risk mitigation, recovery, and chronic disease self-management. This included nurses, physicians, COVID-19 survivors and their carepartners, public health, and community leaders connected with the healthcare systems in rural counties of South Carolina. Results: Five major themes were identified across the subgroups. The themes: The COVID-19 Illness Trajectory Added Major Health Challenges and Stressors, Access to Care Is Lacking, Support is Needed for COVID-19 Survivors and Care Partners, Support Must be Distributed Equitably, and Racism and Structural Issues Affect Stress reflect the strengths, opportunities, and inequities perceived within these groups. Conclusion: This research is the first qualitative study focused on COVID-19 survivor-carepartner dyads that consider the intersectionality of race/ ethnicity, geography, and health that is known to occur when engaging healthcare systems. The themes illustrate the need for infectious disease prevention at all socioecological levels: structural/ systemic, community, organizational/ institutional, interpersonal, and individual.
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Lung cancer is the third most common cancer with Black/AA men showing higher risk and poorer outcomes than NHW men. Lung cancer disparities are multifactorial, driven by tobacco exposure, inequities in care access, upstream health determinants, and molecular determinants including biological and genetic factors. Elevated expressions of protein arginine methyltransferases (PRMTs) correlating with poorer prognosis have been observed in many cancers. Most importantly, our study shows that PRMT6 displays higher expression in lung cancer tissues of Black/AA men compared to NHW men. In this study, we investigated the underlying mechanism of PRMT6 and its cooperation with PRMT1 to form a heteromer as a driver of lung cancer. Disrupting PRMT1/PRMT6 heteromer by a competitive peptide reduced proliferation in non-small cell lung cancer cell lines and patient-derived organoids, therefore, giving rise to a more strategic approach in the treatment of Black/AA men with lung cancer and to eliminate cancer health disparities.
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BACKGROUND: Exposure to racial discrimination may exacerbate disparities throughout the cancer care continuum. Therefore, we explored how experiences of racial discrimination in the health-care setting manifest for Black cancer patients and how it contributes to racial disparities in cancer care. METHODS: This qualitative analysis used semistructured in-depth interviews with Black cancer survivors not on active treatment from May 2019 to March 2020. All interviews were audio recorded, professionally transcribed, and uploaded into Dedoose software for analysis. We identified major themes and subthemes that highlight exposure to racial discrimination and its consequences for Black cancer patients when receiving cancer care. RESULTS: Participants included 18 Black cancer survivors, aged 29-88 years. Most patients experienced racial discrimination when seeking care. Participants experienced racial discrimination from their interactions with health-care staff, medical assistants, front desk staff, and health insurance administrators. Exposure to overt racial discrimination in the health-care setting was rooted in racial stereotypes and manifested through verbal insults such as physicians using phrases such as "you people." These experiences impacted the ability of the health-care delivery system to demonstrate trustworthiness. Patients noted "walking out" of their visit and not having their health issues addressed. Despite experiences with racial discrimination, patients still sought care out of necessity believing it was an inevitable part of the Black individual experience. CONCLUSION: We identified that exposure to racial discrimination in the health-care setting is pervasive, affects health-seeking behaviors, and degrades the patient-clinician relationship, which may likely contribute to racial disparities in cancer care.
Assuntos
Negro ou Afro-Americano , Atenção à Saúde , Disparidades em Assistência à Saúde , Neoplasias , Aceitação pelo Paciente de Cuidados de Saúde , Racismo , Humanos , População Negra , Continuidade da Assistência ao Paciente , Atenção à Saúde/etnologia , Neoplasias/etnologia , Neoplasias/terapia , Grupos Raciais , Racismo/etnologia , Disparidades em Assistência à Saúde/etnologia , Pesquisa Qualitativa , Desigualdades de Saúde , Adulto , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou mais , Aceitação pelo Paciente de Cuidados de Saúde/etnologia , Relações Médico-PacienteRESUMO
The striking ethnic and racial disparities in breast cancer mortality are not explained fully by pathological or clinical features. Structural racism contributes to adverse conditions that promote cancer inequities, but the pathways by which this occurs are not fully understood. Social determinants of health (SDOH), such as economic status and access to care, account for a portion of this variability, yet interventions designed to mitigate these barriers have not consistently led to improved outcomes. Based on the current evidence from multiple disciplines, we describe a conceptual model in which structural racism and racial discrimination contribute to increased mortality risk in diverse groups of patients by promoting adverse SDOH that elevate exposure to environmental hazards and stress; these exposures in turn contribute to epigenetic and immune dysregulation, thereby altering breast cancer outcomes. Based on this model, opportunities and challenges arise for interventions to reduce racial and ethnic disparities in breast cancer mortality.