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BACKGROUND: Decision regret is an emerging patient reported outcome. The aim of this study was to assess the incidence of regret in patients with appendiceal cancer (AC) who underwent cytoreductive surgery and hyperthermic intraperitoneal chemotherapy (CRS-HIPEC). PATIENTS AND METHODS: An anonymous survey was distributed to patients through the Appendix Cancer and Pseudomyxoma Peritonei (ACPMP) Research Foundation. The Decision Regret Scale (DRS) was employed, with DRS > 25 signifying regret. Patient demographics, tumor characteristics, postoperative outcomes, symptoms (FACT-C), and PROMIS-29 quality of life (QoL) scores were compared between patients who regretted or did not regret (NO-REG) the procedure. RESULTS: A total of 122 patients were analyzed. The vast majority had no regret about undergoing CRS-HIPEC (85.2%); 18 patients expressed regret (14.8%). Patients with higher regret had: income ≤ $74,062 (72.2% vs 44.2% NO-REG; p = 0.028), major complications within 30 days of surgery (55.6% vs 15.4% NO-REG; p < 0.001), > 30 days hospital stay (38.9% vs 4.8% NO-REG; p < 0.001), a new ostomy (27.8% vs 7.7% NO-REG; p = 0.03), >1 CRS-HIPEC procedure (56.3% vs 12.6% NO-REG; p < 0.001). Patients with worse FACT-C scores had more regret (p < 0.001). PROMIS-29 QOL scores were universally worse in patients with regret. Multivariable analysis demonstrated > 30 days in the hospital, new ostomy and worse gastrointestinal symptom scores were significantly associated with regret. CONCLUSIONS: The majority of patients with AC undergoing CRS-HIPEC do not regret undergoing the procedure. Lower income, postoperative complications, an ostomy, undergoing > 1 procedure, and with worse long-term gastrointestinal symptoms were associated with increased regret. Targeted perioperative psychological support and symptom management may assist to ameliorate regret.
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PURPOSE: Family physician (FP)-performed screening colonoscopies can serve as 1 strategy in the multifaceted strategy necessary to improve national colorectal cancer screening rates, particularly in rural areas where specialist models can fail. However, little research exists on the performance of this strategy in the real world. In this study, we evaluated trends in and factors associated with FP-performed screening colonoscopies in the United States between 2016 and 2021. METHODS: Using national data from Merative's Marketscan insurance claims database, we estimate the proportion of screening colonoscopies performed by FPs. We use logistic regression models to evaluate factors independently associated with FP-performed colonoscopies. RESULTS: The percentage of screening colonoscopies performed by FPs exhibited a downward trend from 11.32% in 2016 to 6.73% in 2021, with the largest decrease occurring among patients from the most rural areas. FPs were more likely to perform colonoscopies on slightly older patients, male patients, and rural patients. Patients were less likely to receive FP-performed colonoscopies in large metropolitan areas compared to lesser populated areas. Patients were more likely to receive FP-performed colonoscopies in the Midwest, South, and West, even after accounting for urban-rural classification. CONCLUSION: Despite a downward trajectory, FPs perform a substantial proportion of screening colonoscopies in the United States. Changes to the business side of health care delivery may be contributing to the observed decreasing rate. Whether through spatial or relational proximity, FPs may be better positioned to provide colonoscopy to some rural, male, and older patients who otherwise may not have been screened. Policy changes to expand the FP workforce, particularly in rural areas, are likely necessary to slow or reverse the downward trend of FP-performed screening colonoscopies.
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BACKGROUND: Despite the effectiveness of colorectal cancer (CRC) screening, American Indians (AIs) have low screening rates in the US. Many AIs receive care at Indian Health Services, Tribal, and Urban Indian (I/T/U) healthcare facilities, where published evidence regarding the implementation of CRC screening interventions is lacking. To address this gap, the University of New Mexico Comprehensive Cancer Center and the Albuquerque Area Southwest Tribal Epidemiology Center collaborated with two tribally-operated healthcare facilities in New Mexico with the goal of improving CRC screening rates among New Mexico's AI communities. METHODS: Guided by the principles of Community Based Participatory Research, we engaged providers from the two tribal healthcare facilities and tribal community members through focus group (two focus groups with providers (n = 15) and four focus group and listening sessions with community members (n = 65)), to elicit perspectives on the feasibility and appropriateness of implementing The Guide to Community Preventive Services (The Community Guide) recommended evidence-based interventions (EBIs) and strategies for increasing CRC screening. Within each tribal healthcare facility, we engaged a Multisector Action Team (MAT) that participated in an implementation survey to document the extent to which their healthcare facilities were implementing EBIs and strategies, and an organizational readiness survey that queried whether their healthcare facilities could implement additional strategies to improve uptake of CRC screening. RESULTS: The Community Guide recommended EBIs and strategies that received the most support as feasible and appropriate from community members included: one-on-one education from providers, reminders, small media, and interventions that reduced structural barriers. From the providers' perspective, feasible and acceptable strategies included one-on-one education, patient and provider reminders, and provider assessment and feedback. Universally, providers mentioned the need for patient navigators who could provide culturally appropriate education about CRC and assist with transportation, and improved support for coordinating clinical follow-up after screening. The readiness survey highlighted overall readiness of the tribal facility, while the implementation survey highlighted that few strategies were being implemented. CONCLUSIONS: Findings from this study contribute to the limited literature around implementation research at tribal healthcare facilities and informed the selection of specific implementation strategies to promote the uptake of CRC screening in AI communities.
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Over the last two decades, strides in cancer prevention, earlier detection, and novel treatments have reduced overall cancer mortality; however, cancer health disparities (CHD) persist among demographically diverse and intersecting populations. The development of a culturally responsive workforce trained in interdisciplinary, team-based science is a key strategy for addressing these cancer disparities. The Cancer Research - Scholarship and Training Experience in Population Sciences (C-STEPS) program at the University of New Mexico Comprehensive Cancer Center is designed to increase and diversify the biomedical and behavioral research workforce by providing specialized and experiential curricula that highlight team-oriented cancer control and population science. Undergraduate students interested in CHD and in pursuing STEM-H (science, technology, engineering, mathematics, and health) graduate or professional degrees are eligible for the program. C-STEPS students are paired with a UNM faculty mentor, who guides the student's 10-week summer research experience. They receive mentorship and support from three layers-faculty, near-peers (graduate students), and peers (undergraduates who have completed the C-STEPS program previously). Students generate five products, including a capstone presentation, grounded in the research they conduct with their faculty mentors. Since its founding in 2021, C-STEPS has trained three cohorts with a total of 32 students. The C-STEPS program provides a unique team-science approach with multilayer mentoring to create a sustainable pipeline for the development of students interested in STEM-H fields and CHD research. The capstone project led to 47% of students presenting their work at conferences, and two publishing their manuscripts in peer-reviewed journals. Overall, 89% of students were either "satisfied" or "very satisfied" with the program and the same percentage recommended the program to other undergraduates.
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PURPOSE: Breast cancer is the leading form of cancer and has the second highest mortality rate of cancers for American Indian/Alaska Native (AI/AN) women. Early screening is critical. This study examines the breast cancer-related knowledge, beliefs, and behaviors of Zuni women in the Southwest United States (U.S.). METHODS: In 2020 and 2021, a survey was administered to better understand cancer screening patterns in Zuni Pueblo; 110 women from 50 to 75 years of age were recruited to respond to the breast cancer screening portion. Inclusion criteria included self-identifying as AI, a member of the Zuni tribe, or married to a Zuni tribal member, and meeting the age and gender requirements. Descriptive statistics and bivariate analyses were conducted examining the associations between measures of breast cancer knowledge, beliefs, and behaviors and breast cancer screening status (never, ever/non-compliant, and ever/compliant). RESULTS: Of survey participants, 47.3% have had a breast cancer screening and are up-to-date, 39.1% have had a screening in the past but are not up-to-date, and 13.6% have never been screened. Age was the only statistically significant socioeconomic predictor of breast cancer screening; the median (interquartile range) ages of each group are 62 (54, 68) ever/compliant, 56 (54, 68) ever/non-compliant, and 53 (51, 55) never (p-value < 0.001). Significant differences by health status and access to medical care include having a regular health care provider and going to see a provider for routine check-ups. The survey also shows differences in knowledge about breast cancer risk factors, beliefs, and behaviors. Women across all three screening statuses reported that they would get screened if encouraged by a health care provider. CONCLUSION: While survey respondents report a relatively high rate of ever having had a breast cancer screening, less than half are compliant with screening guidelines, which shows there is an opportunity to improve breast cancer screening rates. With culturally tailored interventions, providers have the potential to improve breast cancer screening for Zuni women.
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Neoplasias de la Mama , Indígenas Norteamericanos , Humanos , Femenino , Neoplasias de la Mama/diagnóstico , Neoplasias de la Mama/prevención & control , Detección Precoz del Cáncer , Mamografía , Aceptación de la Atención de Salud , Conocimientos, Actitudes y Práctica en Salud , Tamizaje MasivoRESUMEN
Introduction: Leveraging cancer screening tests, such as the fecal immunochemical test (FIT), that allow for self-sampling and postal mail for screening invitations, test delivery, and return can increase participation in colorectal cancer (CRC) screening. The range of approaches that use self-sampling and mail for promoting CRC screening, including use of recommended best practices, has not been widely investigated. Methods: We characterized self-sampling and mail strategies used for implementing CRC screening across a consortium of 8 National Cancer Institute Cancer Moonshot Initiative Accelerating Colorectal Cancer Screening and Follow-up through Implementation Science (ACCSIS) research projects. These projects serve diverse rural, urban, and tribal populations in the US. Results: All 8 ACCSIS projects leveraged self-sampling and mail to promote screening. Strategies included organized mailed FIT outreach with mailed invitations, including FIT kits, reminders, and mailed return (nâ¯=â¯7); organized FIT-DNA outreach with mailed kit return (nâ¯=â¯1); organized on-demand FIT outreach with mailed offers to request a kit for mailed return (nâ¯=â¯1); and opportunistic FIT-DNA with in-clinic offers to be mailed a test for mailed return (nâ¯=â¯2). We found differences in patient identification strategies, outreach delivery approaches, and test return options. We also observed consistent use of Centers for Disease Control and Prevention Summit consensus best practice recommendations by the 7 projects that used mailed FIT outreach. Conclusion: In research projects reaching diverse populations in the US, we observed multiple strategies that leverage self-sampling and mail to promote CRC screening. Mail and self-sampling, including mailed FIT outreach, could be more broadly leveraged to optimize cancer screening.
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Neoplasias Colorrectales , Detección Precoz del Cáncer , Humanos , Servicios Postales , Ciencia de la Implementación , Estudios de Seguimiento , Tamizaje Masivo , Neoplasias Colorrectales/diagnóstico , Sangre Oculta , ADNRESUMEN
We identified preferences toward Community Preventive Services Task Force (CPSTF)-recommended intervention approaches among screen-eligible Zuni Pueblo members in New Mexico, USA and assessed if there were significant differences in those preferences, with the goal of informing the selection of intervention approaches for use in the Zuni Pueblo. We utilize data from a population-based survey (n = 280) focused on 15 CPSTF-recommended intervention approaches designed to improve screening for cervical, breast, and/or colorectal cancer screening. Model-adjusted results suggest some intervention approaches garnered significantly higher support than others. We offer six, data-driven recommendations for consideration by public health practitioners as they endeavor to improve cancer prevention in the Zuni Pueblo. This study provides a replicable model for other public health practitioners and health services researchers to incorporate community preferences in community-level intervention approach selection.
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PURPOSE: American Indian/Alaska Native (AI/AN) populations have some of the lowest cancer screening rates compared to other racial/ethnic populations. Using community-based participatory research methods, we sought to characterize knowledge, attitudes, beliefs, and approaches to enhance breast, colorectal, and cervical cancer screening. METHODS: We conducted 12 focus groups between October 2018 and September 2019 with 96 eligible AI adults and healthcare providers, recruited using non-probability purposive sampling methods from the Zuni Pueblo in rural New Mexico. We used the Multi-level Health Outcomes Framework (MHOF) to conduct a qualitative content analysis identifying mutable systems- and individual- level constructs important for behavior change that we crosslinked with the Community Preventive Services Task Force (CPSTF) recommended evidence-based interventions (EBIs) or approaches. RESULTS: Salient systems-level factors that limited uptake of cancer screenings included inflexible clinic hours, transportation barriers, no on-demand service and reminder systems, and brief doctor-patient encounters. Individual-level barriers included variable cancer-specific knowledge that translated into fatalistic beliefs, fear, and denial. Interventions to enhance community demand and access for screening should include one-on-one and group education, small media, mailed screening tests, and home visitations by public health nurses. Interventions to enhance provider delivery of screening services should include translation and case management services. CONCLUSIONS: The MHOF constructs crosslinked with CPSTF recommended EBIs or approaches provided a unique perspective to frame barriers and promoters of screening utilization and insights for intervention development. Findings inform the development of culturally tailored, theoretically informed, multi-component interventions concordant with CPSTF recommended EBIs or approaches aimed at improving cancer screening.
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Neoplasias Colorrectales , Indígenas Norteamericanos , Neoplasias del Cuello Uterino , Femenino , Adulto , Humanos , Indio Americano o Nativo de Alaska , Accesibilidad a los Servicios de Salud , New Mexico , Detección Precoz del Cáncer , Neoplasias del Cuello Uterino/diagnóstico , Neoplasias del Cuello Uterino/prevención & control , Neoplasias Colorrectales/diagnóstico , Neoplasias Colorrectales/prevención & control , Personal de SaludRESUMEN
American Indian women experience cervical cancer disparities, including later-stage diagnosis and a higher cervical cancer mortality rate. These disparities are interconnected and linked to cervical cancer screening disparities. Cervical cancer when identified early is highly treatable. Individual- and health system-level factors often contribute to gaps in cervical cancer screening. To better understand the source of these inequities experienced by American Indian women, specifically Zuni women, this paper examines how knowledge about cervical cancer and related risk factors is linked to cervical cancer screening for Zuni women using primary data gathered by the Zuni Health Initiative in 2020 and 2021. We find that of the women who completed the survey (n = 171), women with greater cervical cancer knowledge are statistically significantly more likely to have received cervical cancer screening. Closer examination of knowledge on the specific risk factors for cervical cancer provides evidence upon which to develop a cervical cancer education intervention.
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Conocimientos, Actitudes y Práctica en Salud , Indígenas Norteamericanos , Neoplasias del Cuello Uterino , Femenino , Humanos , Detección Precoz del Cáncer , Prueba de Papanicolaou , Factores de Riesgo , Estados Unidos/epidemiología , Neoplasias del Cuello Uterino/diagnóstico , Neoplasias del Cuello Uterino/prevención & controlRESUMEN
This project compared the effectiveness of two evidence-based models of culturally competent diabetes health promotion: The Diabetes Self-Management Support Empowerment Model (DSMS), and The Chronic Care Model (CCM). Our primary outcome was improvement in patient capacity for diabetes self-management as measured by the Diabetes Knowledge Questionnaire (DKQ) and the Patient Activation Measure (PAM). Our secondary outcome was patient success at diabetes self-management as measured by improvement in A1c, depression sores using the PHQ-9, and Body Mass Index (BMI). We also gathered data on the cultural competence of the program using the Consumer Assessment of Healthcare Providers and Systems Cultural Competence Set (CAHPS-CC). We compared patient outcomes in two existing sites in Albuquerque, New Mexico that serve a large population of Latino diabetes patients from low-income households. Participants were enrolled as dyads-a patient participant (n=226) and a social support participant (n=226). Outcomes over time and by program were analyzed using longitudinal linear mixed modeling, adjusted for patient participant demographic characteristics and other potential confounding covariates. Secondary outcomes were also adjusted for potential confounders. Interactions with both time and program helped to assess outcomes. This study did not find a difference between the two sites with respect to the primary outcome measures and only one of the three secondary outcomes showed differential results. The main difference between programs was that depression decreased more for CCM than for DSMS. An exploratory, subgroup analysis revealed that at CCM, patient participants with a very high A1c (>10) demonstrated a clinically meaningful decrease. However, given the higher cultural competence rating for the CCM, statistically significant improvement in depression, and the importance of social support to the patients, results suggest that a culturally and contextually situated diabetes self-management and education program design may deliver benefit for patients, especially for patients with higher A1c levels.
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Although strategies to mitigate barriers to colorectal cancer (CRC) screening have proven successful in some parts of the US, few of these strategies have been studied in rural, American Indian communities that may exhibit unique culturally driven attitudes toward and knowledge of colorectal cancer and experience increased barriers to healthcare access. In this study, we describe the results of a survey among CRC screen-eligible members of Zuni Pueblo (N = 218) on an array of questions regarding CRC screening behaviors, knowledge, satisfaction with and access to healthcare services, social support for CRC screening, perceptions toward FOBT, and preference for evidence-based interventions or strategies for improving CRC screening rates. Results from the multivariable model suggest age, having a regular healthcare provider, and harboring fewer negative perceptions toward FOBT are key drivers of ever completing CRC screening. Respondents reported strong support for Community Guide-recommended interventions and strategies for increasing CRC screening for nearly all proposed interventions. Results confirm the need for multilevel, multicomponent interventions, with a particular focus on improving Zuni Pueblo community members' access to a regular source of care, improving knowledge of CRC risk factor, and addressing negative perceptions toward CRC screening. These results provide critical, community-specific insight into better understanding the drivers of low guideline-adherent screening rates and inform local healthcare providers and community leaders of context-specific strategies to improve CRC screening in Zuni Pueblo.
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Neoplasias Colorrectales , Detección Precoz del Cáncer , Humanos , Adulto , Colonoscopía , Accesibilidad a los Servicios de Salud , Encuestas y Cuestionarios , Neoplasias Colorrectales/diagnóstico , Neoplasias Colorrectales/prevención & control , Sangre Oculta , Tamizaje MasivoRESUMEN
BACKGROUND: Although patient navigation has shown promise for increasing participation in colorectal cancer screening and follow-up, little evidence is available to guide implementation of patient navigation in clinical practice. We characterize 8 patient navigation programs being implemented as part of multi-component interventions of the National Cancer Institute's Cancer Moonshot Accelerating Colorectal Cancer Screening and Follow-Up Through Implementation Science (ACCSIS) initiative. METHODS: We developed a data collection template organized by ACCSIS framework domains. The template was populated by a representative from each of the 8 ACCSIS research projects. We report standardized descriptions of 1) the socio-ecological context in which the navigation program was being conducted, 2) navigation program characteristics, 3) activities undertaken to facilitate program implementation (eg, training), and 4) outcomes used in program evaluation. RESULTS: ACCSIS patient navigation programs varied broadly in their socio-ecological context and settings, the populations they served, and how they were implemented in practice. Six research projects adapted and implemented evidence-based patient navigation programs; the remaining projects developed new programs. Five projects began navigation when patients were due for initial colorectal cancer screening; 3 projects began navigation later in the screening process, when patients were due for follow-up colonoscopy after an abnormal stool-test result. Seven projects relied on existing clinical staff to deliver the navigation; 1 hired a centralized research navigator. All project researchers plan to evaluate the effectiveness and implementation of their programs. CONCLUSIONS: Our detailed program descriptions may facilitate cross-project comparisons and guide future implementation and evaluation of patient navigation programs in clinical practice.
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Neoplasias Colorrectales , Navegación de Pacientes , Humanos , Detección Precoz del Cáncer , Neoplasias Colorrectales/diagnóstico , Evaluación de Programas y Proyectos de Salud , Tamizaje MasivoRESUMEN
BACKGROUND: Engaging diverse populations in cancer genomics research is of critical importance and is a fundamental goal of the NCI Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network. Established as part of the Cancer Moonshot, PE-CGS is a consortium of stakeholders including clinicians, scientists, genetic counselors, and representatives of potential study participants and their communities. Participant engagement is an ongoing, bidirectional, and mutually beneficial interaction between study participants and researchers. PE-CGS sought to set priorities in participant engagement for conducting the network's research. METHODS: PE-CGS deliberatively engaged its stakeholders in the following four-phase process to set the network's research priorities in participant engagement: (i) a brainstorming exercise to elicit potential priorities; (ii) a 2-day virtual meeting to discuss priorities; (iii) recommendations from the PE-CGS External Advisory Panel to refine priorities; and (iv) a virtual meeting to set priorities. RESULTS: Nearly 150 PE-CGS stakeholders engaged in the process. Five priorities were set: (i) tailor education and communication materials for participants throughout the research process; (ii) identify measures of participant engagement; (iii) identify optimal participant engagement strategies; (iv) understand cancer disparities in the context of cancer genomics research; and (v) personalize the return of genomics findings to participants. CONCLUSIONS: PE-CGS is pursuing these priorities to meaningfully engage diverse and underrepresented patients with cancer and posttreatment cancer survivors as participants in cancer genomics research and, subsequently, generate new discoveries. IMPACT: Data from PE-CGS will be shared with the broader scientific community in a manner consistent with participant informed consent and community agreement.
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Consentimiento Informado , Neoplasias , Humanos , Neoplasias/genética , Motivación , Genómica , EscolaridadRESUMEN
Background and study aims We assessed sessile serrated lesion detection rate (SSLDR) at a large academic medical center from 2008 to 2020 and modeled a local, aspirational target SSLDR. We also assessed SSLDRs among all gastroenterology fellows to better understand the relationship between SSLDRs and total colonoscopies performed. Patients and methods SSL-positive pathology results were flagged from a dataset composed of all screening colonoscopies for average-risk patients from 2008 to 2020.âUnadjusted SSLDRs were calculated for individual endoscopists by year. A mixed effects logistic regression was used to estimate the log odds of SSL detection, with one model estimating division-wide predictors of SSL detection and a second model focused exclusively on colonoscopies performed by fellows. Model-adjusted SSLDRs were estimated for all 13 years and across both categories of all endoscopists and fellows only. Results Adjusted SSLDRs showed a consistent improvement in SSLDR from a low of 0.37â% (95â% confidence interval [CI]: 0.10-0.63) in 2008 to a high of 7.94â% (95â% CI: 6.34-9.54) in 2020.âAmong fellows only, the odds of SSL detection were significantly lower during their first year compared to their second year (OR: 0.80, 95â% CI: 0.66-0.98) but not significantly higher in their third year compared to their second year (OR: 1.09, 95â% CI: 0.85-1.4). Conclusions SSLDR increased steadily and significantly throughout our study period but variance among endoscopists persists. The peak SSLDR from 2020 of 7.94â% should serve as the local aspirational target for this division's attendings and fellows but should be continuously reevaluated.
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Colorectal cancer (CRC) disparities continue to persist in the four corners region (states of New Mexico, Arizona, Utah, and Colorado) of the United States. The Comprehensive Cancer Control (CCC) state plans provide a policy and practice snapshot on how a state identifies and addresses its cancer burden. This study critically examines the four state plans to identify gaps and opportunities for cancer prevention and control. Using a conventional content analysis approach, we reviewed the CCC plans for CRC screening-related information, culminating in a conceptual framework that highlights three themes. First, states reported their cancer burden using national data from American Cancer Society, Centers for Disease Control and Prevention, or the NCI's Surveillance, Epidemiology, and End Results. Although these data informed specific goals and objectives, not all plans reported state-level data on CRC differences by specific social determinants of health and other characteristics. Second, it was not clear whether the interventions chosen to address state plan objectives were evidence-based and whether or not clearly described criteria were used for the selection of the interventions. Third, very limited information was provided in terms of state-specific contextual challenges and practical implementation of interventions. Study findings highlight opportunities to improve state-level cancer prevention and control efforts: first, by promoting the selection and adaptation of contextually relevant evidence-based interventions for this unique region; and second, through multidirectional engagement with communities, researchers, and policy and practice stakeholders. Such synergies in research and policies are vital for a coordinated and integrated approach to cancer prevention and control.
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Neoplasias Colorrectales , Detección Precoz del Cáncer , Estados Unidos , Humanos , Neoplasias Colorrectales/diagnóstico , Neoplasias Colorrectales/prevención & control , Arizona , Colorado , New MexicoRESUMEN
American Indians experience disparities in cancer screening, stage at disease diagnoses, and 5-year cancer survival. This study investigates how health literacy and health numeracy may be linked to cancer screening behaviors of Zuni Pueblo members using a survey exploring screening behaviors related to breast, cervical, and colorectal cancers. As part of a larger community-based cancer prevention and control project, Zuni Health Initiative staff conducted surveys from October 2020 through April 2021 of 281 participants (men ages 50-75 and women ages 21-75) from the Zuni Pueblo. Bivariate and multivariable analyses investigated associations between health literacy/numeracy measures and cancer screening behaviors. Bivariate analyses showed some associations between distinct measures of health literacy/numeracy and colorectal cancer (CRC) screening, including both colonoscopy (health literacy) and fecal occult blood testing (FOBT) (health numeracy), as well as cervical cancer screening (health literacy). There were no statistically significant associations between health literacy/numeracy measures and mammogram screening for breast cancer. In multivariable analyses, there were no consistent patterns between health literacy/numeracy and screening for any cancer. There are some individual findings worth noting, such as statistically significant findings for health numeracy and FOBT (those reporting lower health numeracy were less likely to report FOBT). An important finding of this study is that questions used to assess health literacy/numeracy did not identify associations aligned with previous research. We reflect on the ways the "standard" questions may not be sufficiently tailored to the Zuni experience and may contribute to health equity barriers.
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Neoplasias Colorrectales , Alfabetización en Salud , Neoplasias del Cuello Uterino , Masculino , Humanos , Femenino , Detección Precoz del Cáncer , Neoplasias del Cuello Uterino/diagnóstico , Neoplasias del Cuello Uterino/prevención & control , Encuestas y Cuestionarios , Neoplasias Colorrectales/diagnóstico , Neoplasias Colorrectales/prevención & controlRESUMEN
INTRODUCTION: Survival following colorectal cancer (CRC) has improved in the US since 1975, but there is limited information on stage-specific survival trends among racial and ethnic subgroups. OBJECTIVES: The purpose of this study was to estimate and compare trends in 1- and 5-year CRC cause-specific survival in the United States by both stage and race/ethnicity. METHODS: We performed a retrospective cohort study of individuals diagnosed with CRC using the 1992-2018 Surveillance, Epidemiology and End Results (SEER) database. We estimated and compared time trends in 1- and 5-year survival for CRC stage by race/ethnicity. RESULTS: Data from 399 220 individuals diagnosed with CRC were available. There were significant differences in stage-specific 1-year survival trends by race and ethnicity. Differences were most notable for distant stage CRC: survival probabilities increased most consistently for non-Hispanic American Indian/Alaska Native (AIAN) and Black (NHB) persons, but their trend lines were lower than those of Hispanic, and non-Hispanic Asian/Pacific Islander (API) and White (NHW) persons, whose initially greater gains appear to be slowing. Although the data do not support significant racial/ethnic differences in 5-year CRC survival trends by stage, AIAN and NHB persons have the lowest average survival probabilities for multiple CRC stages, and no racial/ethnic group has 5-year survival probabilities above 20% for distant-stage CRC. CONCLUSION: Although there has been an overall improvement in adjusted CRC-specific survival probabilities since 1992, AIAN and NHB persons continue to experience worse prognosis than those of other races/ethnicities. This highlights the importance of reinvigorating efforts to understand the causes of mortality in CRC, including those which may differ according to an individual's race or ethnicity.
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Neoplasias Colorrectales , Etnicidad , Estados Unidos/epidemiología , Humanos , Estudios Retrospectivos , Grupos Raciales , Hispánicos o Latinos , Neoplasias Colorrectales/diagnósticoRESUMEN
OBJECTIVES: Studies of race-specific colon cancer (CC) survival differences between right- vs. left-sided CC typically focus on Black and White persons and often consider all CC stages as one group. To more completely examine potential racial and ethnic disparities in side- and stage-specific survival, we evaluated 5-year CC cause-specific survival probabilities for five racial/ethnic groups by anatomic site (right or left colon) and stage (local, regional, distant). METHODS: We obtained cause-specific survival probability estimates from National Cancer Institute's population-based Surveillance, Epidemiology, and End Results (SEER) for CC patients grouped by five racial/ethnic groups (Non-Hispanic American Indian/Alaska Native [AIAN], Non-Hispanic Asian/Pacific Islander [API], Hispanic, Non-Hispanic Black [NHB], and Non-Hispanic White [NHW]), anatomic site, stage, and other patient and SEER registry characteristics. We used meta-regression approaches to identify factors that explained differences in cause-specific survival. RESULTS: Diagnoses of distant-stage CC were more common among NHB and AIAN persons (>22 %) than among NHW and API persons (< 20 %). Large disparities in anatomic site-specific survival were not apparent. Those with right-sided distant-stage CC had a one-year cause-specific survival probability that was 16.4 % points lower (99 % CI: 12.2-20.6) than those with left-sided distant-stage CC; this difference decreased over follow-up. Cause-specific survival probabilities were highest for API, and lowest for NHB, persons, though these differences varied substantially by stage at diagnosis. AIAN persons with localized-stage CC, and NHB persons with regional- and distant-stage CC, had significantly lower survival probabilities across follow-up. CONCLUSIONS: There are differences in CC presentation according to anatomic site and disease stage among patients of distinct racial and ethnic backgrounds. This, coupled with the reality that there are persistent survival disparities, with NHB and AIAN persons experiencing worse prognosis, suggests that there are social or structural determinants of these disparities. Further research is needed to confirm whether these CC cause-specific survival disparities are due to differences in risk factors, screening patterns, cancer treatment, or surveillance, in order to overcome the existing differences in outcome.
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Neoplasias del Colon , Neoplasias del Colon/diagnóstico , Etnicidad , Humanos , Grupos Raciales , Estados Unidos/epidemiología , Indio Americano o Nativo de AlaskaRESUMEN
IMPORTANCE: Research into the genetic and genomic ("genomics") foundations of disease is central to our understanding of disease prevention, early detection, diagnostic accuracy, and therapeutic intervention. Inequitable participation in genomics research by historically excluded populations limits the ability to translate genomic knowledge to achieve health equity and ensure that findings are generalizable to diverse populations. OBSERVATIONS: We propose a novel framework for promoting diversity, equity, and inclusion in genomics research. Building on principles of community-based participatory research and collective impact frameworks, the framework can guide our understanding of the social, cultural, health system, policy, community, and individual contexts in which engagement and genomics research are being done. Our framework highlights the involvement of a multistakeholder team, including the participants and communities to be engaged, to ensure robust methods for recruitment, retention, return of genomic results, quality of engagement, follow-up, and monitoring of participants. CONCLUSIONS AND RELEVANCE: The proposed engagement framework will guide investigators in optimizing equitable representation in research and enhancing the rigor of genomics investigation.
Asunto(s)
Investigación Participativa Basada en la Comunidad , Equidad en Salud , Investigación Participativa Basada en la Comunidad/métodos , Genómica , Humanos , Grupos de PoblaciónRESUMEN
Purpose: Around 5% of United States (U.S.) population identifies as Sexual and Gender Diverse (SGD), yet there is limited research around cancer prevention among these populations. We present multi-pronged, low-cost, and systematic recruitment strategies used to reach SGD communities in New Mexico (NM), a state that is both largely rural and racially/ethnically classified as a "majority-minority" state. Methods: Our recruitment focused on using: (1) Every Door Direct Mail (EDDM) program, by the United States Postal Services (USPS); (2) Google and Facebook advertisements; (3) Organizational outreach via emails to publicly available SGD-friendly business contacts; (4) Personal outreach via flyers at clinical and community settings across NM. Guided by previous research, we provide detailed descriptions on using strategies to check for fraudulent and suspicious online responses, that ensure data integrity. Results: A total of 27,369 flyers were distributed through the EDDM program and 436,177 impressions were made through the Google and Facebook ads. We received a total of 6,920 responses on the eligibility survey. For the 5,037 eligible respondents, we received 3,120 (61.9%) complete responses. Of these, 13% (406/3120) were fraudulent/suspicious based on research-informed criteria and were removed. Final analysis included 2,534 respondents, of which the majority (59.9%) reported hearing about the study from social media. Of the respondents, 49.5% were between 31-40 years, 39.5% were Black, Hispanic, or American Indian/Alaskan Native, and 45.9% had an annual household income below $50,000. Over half (55.3%) were assigned male, 40.4% were assigned female, and 4.3% were assigned intersex at birth. Transgender respondents made up 10.6% (n=267) of the respondents. In terms of sexual orientation, 54.1% (n=1371) reported being gay or lesbian, 30% (n=749) bisexual, and 15.8% (n=401) queer. A total of 756 (29.8%) respondents reported receiving a cancer diagnosis and among screen-eligible respondents, 66.2% reported ever having a Pap, 78.6% reported ever having a mammogram, and 84.1% reported ever having a colonoscopy. Over half of eligible respondents (58.7%) reported receiving Human Papillomavirus vaccinations. Conclusion: Study findings showcase effective strategies to reach communities, maximize data quality, and prevent the misrepresentation of data critical to improve health in SGD communities.