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Addressing Data Aggregation and Data Inequity in Race and Ethnicity Reporting and the Impact on Breast Cancer Disparities

Wilson, Brianna; Mendez, Jane; Newman, Lisa; Lum, Sharon; Joseph, Kathie-Ann
Collecting and reporting data on race and ethnicity is vital to understanding and addressing health disparities in the United States. These health disparities can include increased prevalence and severity of disease, poorer health outcomes, decreased access to healthcare, etc., in disadvantaged populations compared with advantaged groups. Without these data, researchers, administrators, public health practitioners, and policymakers are unable to identify the need for targeted interventions and assistance. When researching or reporting on race and ethnicity, typically broad racial categories are used. These include White or Caucasian, Black or African American, Asian American, Native Hawaiian or Other Pacific Islander, or American Indian and Alaska Native, as well as categories for ethnicity such as Latino or Hispanic or not Latino or Hispanic. These categories, defined by the Office of Management and Budget, are the minimum standards for collecting and reporting race and ethnicity data across federal agencies. Of note, these categories have not been updated since 1997. The lack of accurate and comprehensive data on marginalized racial and ethnic groups limits our understanding of and ability to address health disparities. This has implications for breast cancer outcomes in various populations in this country. In this paper, we examine the impact data inequity and the lack of data equity centered processes have in providing appropriate prevention and intervention efforts and resource allocations.
PMID: 37840113
ISSN: 1534-4681
CID: 5590182

Patient experiences with tissue-based genomic testing during active surveillance for prostate cancer

Leapman, Michael S; Sutherland, Ryan; Gross, Cary P; Ma, Xiaomei; Seibert, Tyler M; Cooperberg, Matthew R; Catalona, William J; Loeb, Stacy; Schulman-Green, Dena
BACKGROUND/UNASSIGNED:Tissue-based gene expression (genomic) tests provide estimates of prostate cancer aggressiveness and are increasingly used for patients considering or engaged in active surveillance. However, little is known about patient experiences with genomic testing and its role in their decision-making. METHODS/UNASSIGNED:We performed a qualitative study consisting of in-depth, semi-structured interviews of patients with low- or favourable-intermediate-risk prostate cancer managed with active surveillance. We purposively sampled to include patients who received biopsy-based genomic testing as part of clinical care. The interview guide focused on experiences with genomic testing during patients' decision-making for prostate cancer management and understanding of genomic test results. We continued interviews until thematic saturation was reached, iteratively created a code key and used conventional content analysis to analyse data. RESULTS/UNASSIGNED: = 20) mean age was 68 years (range 51-79). At initial biopsy, 17 (85%) had a Gleason grade group 1, and 3 (15%) had a grade group 2 prostate cancer. The decision to undergo genomic testing was driven by both participants and physicians' recommendations; however, some participants were unaware that testing had occurred. Overall, participants understood the role of genomic testing in estimating their prostate cancer risk, and the test results increased their confidence in the decision for active surveillance. Participants had some misconceptions about the difference between tissue-based gene expression tests and germline genetic tests and commonly believed that tissue-based tests measured hereditary cancer risk. While some participants expressed satisfaction with their physicians' explanations, others felt that communication was limited and lacked sufficient detail. CONCLUSION/UNASSIGNED:Patients interact with and are influenced by the results of biopsy-based genomic testing during active surveillance for prostate cancer, despite gaps in understanding about test results. Our findings indicate areas for improvement in patient counselling in order to increase patient knowledge and comfort with genomic testing.
PMCID:10764160
PMID: 38179031
ISSN: 2688-4526
CID: 5737312

State of the Science of Scale-Up of Cancer Prevention and Early Detection Interventions in Low- and Middle-Income Countries: A Scoping Review

Friebel-Klingner, Tara M; Alvarez, Gloria Guevara; Lappen, Hope; Pace, Lydia E; Huang, Keng-Yen; Fernández, Maria E; Shelley, Donna; Rositch, Anne F
PURPOSE/OBJECTIVE:Cancer deaths in low- and middle-income countries (LMICs) will nearly double by 2040. Available evidence-based interventions (EBIs) for cancer prevention and early detection can reduce cancer-related mortality, yet there is a lack of evidence on effectively scaling these EBIs in LMIC settings. METHODS:We conducted a scoping review to identify published literature from six databases between 2012 and 2022 that described efforts for scaling cancer prevention and early detection EBIs in LMICs. Included studies met one of two definitions of scale-up: (1) deliberate efforts to increase the impact of effective intervention to benefit more people or (2) an intervention shown to be efficacious on a small scale expanded under real-world conditions to reach a greater proportion of eligible population. Study characteristics, including EBIs, implementation strategies, and outcomes used, were summarized using frameworks from the field of implementation science. RESULTS:This search yielded 3,076 abstracts, with 24 studies eligible for inclusion. Included studies focused on a number of cancer sites including cervical (67%), breast (13%), breast and cervical (13%), liver (4%), and colon (4%). Commonly reported scale-up strategies included developing stakeholder inter-relationships, training and education, and changing infrastructure. Barriers to scale-up were reported at individual, health facility, and community levels. Few studies reported applying conceptual frameworks to guide strategy selection and evaluation. CONCLUSION/CONCLUSIONS:Although there were relatively few published reports, this scoping review offers insight into the approaches used by LMICs to scale up cancer EBIs, including common strategies and barriers. More importantly, it illustrates the urgent need to fill gaps in research to guide best practices for bringing the implementation of cancer EBIs to scale in LMICs.
PMCID:10805431
PMID: 38237096
ISSN: 2687-8941
CID: 5625582

Bisphenol S, bisphenol F, bisphenol a exposure and body composition in US adults

Liu, Buyun; Yan, Yuxiang; Xie, Juan; Sun, Jian; Lehmler, Hans-Joachim; Trasande, Leonardo; Wallace, Robert B; Bao, Wei
Bisphenol S (BPS) and bisphenol F (BPF) are increasingly used to replace bisphenol A (BPA), an endocrine-disrupting chemical with putative obesogenic properties; whether and how BPS and BPF affect adiposity in humans remains to be determined. Therefore, we examined the association of BPA, BPS, and BPF with body composition among US adults. We included 1787 participants aged 20-59 years old in the National Health and Nutrition Examination Survey 2013-2016 who had information on urinary BPA, BPS, and BPF concentrations, and body composition measured using dual-energy x-ray absorptiometry. After full adjustment for potential confounders in linear regression models, BPA was significantly associated with the % body fat of the whole body, arm, and leg, with the β (95% CI) for the highest quartile vs. the lowest quartile of 1.34 (95%CI [0.11, 2.58], P = 0.03), 1.60 (95%CI [0.20, 3.00], P = 0.03), and 1.63 (95%CI [0.24, 3.02], P = 0.02), respectively. No association between BPA and lean mass was found. For BPS, significant associations were found for % body fat of the whole body (β [95% CI] = 1.42 [0.49, 2.36], P = 0.004), trunk (β[95% CI] = 1.92 [0.86, 2.97], P = 0.001), and arm (β [95% CI] = 1.60 [0.49, 2.70], P = 0.01), as well as lean mass of the whole body (β [95% CI] = 2610.6 [1324.3, 3896.8], P < 0.001), trunk (β [95% CI] = 1467.0 [745.3, 2188.7], P < 0.001), arm (β [95% CI] = 113.4 [10.3, 216.5], P = 0.03), and leg (β [95% CI] = 431.5 [219.6, 643.4], P < 0.001), comparing the third quartile vs. the lowest quartile. No significant association was observed between BPF and % body fat and lean mass. Results suggest that higher BPA levels were significantly associated with greater % body fat of the whole body and limbs, and there was suggestive evidence that BPS levels were associated with both % body fat and lean mass of the whole body and body parts in a nonmonotonic relationship.
PMID: 38303380
ISSN: 1879-1298
CID: 5626862

Orthostatic Blood Pressure Change, Dizziness, and Risk of Dementia in the ARIC Study: Dementia Series

Ma, Yuan; Zhang, Yiwen; Coresh, Josef; Viswanathan, Anand; Sullivan, Kevin J; Walker, Keenan A; Liu, Chelsea; Lipsitz, Lewis A; Selvin, Elizabeth; Sharrett, A Richey; Gottesman, Rebecca F; Blacker, Deborah; Hofman, Albert; Windham, B Gwen; Juraschek, Stephen P
BACKGROUND:Abnormal orthostatic blood pressure (BP) regulation may result in cerebral hypoperfusion and brain ischemia and contribute to dementia. It may also manifest as early symptoms of the neurodegenerative process associated with dementia. The relationship between the magnitude and timing of orthostatic BP responses and dementia risk is not fully understood. METHODS:We conducted a prospective cohort analysis of the associations of orthostatic BP changes and self-reported orthostatic dizziness with the risk of dementia in the Atherosclerosis Risk in Communities study (ARIC). We calculated changes in BP from the supine to the standing position at 5 measurements taken within 2 minutes after standing during the baseline visit (1987-1989). The primary outcome was adjudicated dementia ascertained through 2019. RESULTS:Among 11 644 participants (mean [SD] age, 54.5 [5.7] years; 54.1% women; 25.9% Black), 2303 dementia cases were identified during a median follow-up of 25.9 years. Large decreases in systolic BP from the supine to standing position measured at the first 2 measurements ≈30 and 50 seconds after standing, but not afterward, were associated with orthostatic dizziness and a higher risk of dementia. Comparing a decrease in systolic BP of ≤-20 or >-20 to -10 mm Hg to stable systolic BP (>-10 to 10 mm Hg) at the first measurement, the adjusted hazard ratios were 1.22 (95% CI, 1.01-1.47) and 1.10 (95% CI, 0.97-1.25), respectively. CONCLUSIONS:Abnormal orthostatic BP regulation, especially abrupt drops in BP within the first minute, might be early risk markers for the development of dementia. Transient early orthostatic hypotension warrants more attention in clinical settings.
PMID: 37869909
ISSN: 1524-4563
CID: 5583372

Associations of Organophosphate Ester Flame Retardant Exposures during Pregnancy with Gestational Duration and Fetal Growth: The Environmental influences on Child Health Outcomes (ECHO) Program

Oh, Jiwon; Buckley, Jessie P; Li, Xuan; Gachigi, Kennedy K; Kannan, Kurunthachalam; Lyu, Wenjie; Ames, Jennifer L; Barrett, Emily S; Bastain, Theresa M; Breton, Carrie V; Buss, Claudia; Croen, Lisa A; Dunlop, Anne L; Ferrara, Assiamira; Ghassabian, Akhgar; Herbstman, Julie B; Hernandez-Castro, Ixel; Hertz-Picciotto, Irva; Kahn, Linda G; Karagas, Margaret R; Kuiper, Jordan R; McEvoy, Cindy T; Meeker, John D; Morello-Frosch, Rachel; Padula, Amy M; Romano, Megan E; Sathyanarayana, Sheela; Schantz, Susan; Schmidt, Rebecca J; Simhan, Hyagriv; Starling, Anne P; Tylavsky, Frances A; Volk, Heather E; Woodruff, Tracey J; Zhu, Yeyi; Bennett, Deborah H; ,
BACKGROUND/UNASSIGNED:Widespread exposure to organophosphate ester (OPE) flame retardants with potential reproductive toxicity raises concern regarding the impacts of gestational exposure on birth outcomes. Previous studies of prenatal OPE exposure and birth outcomes had limited sample sizes, with inconclusive results. OBJECTIVES/UNASSIGNED:We conducted a collaborative analysis of associations between gestational OPE exposures and adverse birth outcomes and tested whether associations were modified by sex. METHODS/UNASSIGNED: RESULTS/UNASSIGNED: DISCUSSION/UNASSIGNED:In the largest study to date, we find gestational exposures to several OPEs are associated with earlier timing of birth, especially among female neonates, or with greater fetal growth. https://doi.org/10.1289/EHP13182.
PMCID:10805613
PMID: 38262621
ISSN: 1552-9924
CID: 5624892

How Well Do Artificial Intelligence Chatbots Respond to the Top Search Queries About Urological Malignancies?

Musheyev, David; Pan, Alexander; Loeb, Stacy; Kabarriti, Abdo E
Artificial intelligence (AI) chatbots are becoming a popular source of information but there are limited data on the quality of information on urological malignancies that they provide. Our objective was to characterize the quality of information and detect misinformation about prostate, bladder, kidney, and testicular cancers from four AI chatbots: ChatGPT, Perplexity, Chat Sonic, and Microsoft Bing AI. We used the top five search queries related to prostate, bladder, kidney, and testicular cancers according to Google Trends from January 2021 to January 2023 and input them into the AI chatbots. Responses were evaluated for quality, understandability, actionability, misinformation, and readability using published instruments. AI chatbot responses had moderate to high information quality (median DISCERN score 4 out of 5, range 2-5) and lacked misinformation. Understandability was moderate (median Patient Education Material Assessment Tool for Printable Materials [PEMAT-P] understandability 66.7%, range 44.4-90.9%) and actionability was moderate to poor (median PEMAT-P actionability 40%, range 0-40%The responses were written at a fairly difficult reading level. AI chatbots produce information that is generally accurate and of moderate to high quality in response to the top urological malignancy-related search queries, but the responses lack clear, actionable instructions and exceed the reading level recommended for consumer health information. PATIENT SUMMARY: Artificial intelligence chatbots produce information that is generally accurate and of moderately high quality in response to popular Google searches about urological cancers. However, their responses are fairly difficult to read, are moderately hard to understand, and lack clear instructions for users to act on.
PMID: 37567827
ISSN: 1873-7560
CID: 5738232

Addressing Selection Biases within Electronic Health Record Data for Estimation of Diabetes Prevalence among New York City Young Adults: A Cross-Sectional Study

Conderino, Sarah; Thorpe, Lorna E; Divers, Jasmin; Albrecht, Sandra S; Farley, Shannon M; Lee, David C; Anthopolos, Rebecca
INTRODUCTION/UNASSIGNED:There is growing interest in using electronic health records (EHRs) for chronic disease surveillance. However, these data are convenience samples of in-care individuals, which are not representative of target populations for public health surveillance, generally defined, for the relevant period, as resident populations within city, state, or other jurisdictions. We focus on using EHR data for estimation of diabetes prevalence among young adults in New York City, as rising diabetes burden in younger ages call for better surveillance capacity. METHODS/UNASSIGNED:This article applies common nonprobability sampling methods, including raking, post-stratification, and multilevel regression with post-stratification, to real and simulated data for the cross-sectional estimation of diabetes prevalence among those aged 18-44 years. Within real data analyses, we externally validate city- and neighborhood-level EHR-based estimates to gold-standard estimates from a local health survey. Within data simulations, we probe the extent to which residual biases remain when selection into the EHR sample is non-ignorable. RESULTS/UNASSIGNED:Within the real data analyses, these methods reduced the impact of selection biases in the citywide prevalence estimate compared to gold standard. Residual biases remained at the neighborhood-level, where prevalence tended to be overestimated, especially in neighborhoods where a higher proportion of residents were captured in the sample. Simulation results demonstrated these methods may be sufficient, except when selection into the EHR is non-ignorable, depending on unmeasured factors or on diabetes status. CONCLUSIONS/UNASSIGNED:While EHRs offer potential to innovate on chronic disease surveillance, care is needed when estimating prevalence for small geographies or when selection is non-ignorable.
PMCID:11578099
PMID: 39568629
ISSN: 2753-4294
CID: 5758672

Adult day services: a potential antidote to social isolation and loneliness in marginalized older adults

Sadarangani, Tina; Fernandez Cajavilca, Moroni; Qi, Xiang; Zagorski, William
Loneliness and social isolation affect more than 1 in 4 community-dwelling older adults in the United States, who may also require long-term care support. Despite being seen as a solution to the long-term care crisis, most older adults prefer to age in place rather than using skilled nursing facilities. However, in-home care is unsustainable due to a shortage of direct care workers and may exacerbate social isolation by confining older adults to their homes. Adult Day Services (ADS) addresses both issues. ADS provides care to adults with physical, functional, and or cognitive limitations in non-residential, congregate, community-based settings. ADS also provides daily cognitive and physical stimulation, often with medical support, in a social and supported environment, centered around the needs and preferences of participants. Before the COVID-19 pandemic, nearly 5,000 ADS centers were widely available. However, with limited public support, the ADS industry has struggled as demand by the growing number of older adults and families need health and social support. The ADS industry must be recognized for its unique ability to buffer social isolation and loneliness in chronically ill older adults while serving as an effective platform for chronic disease management. This perspective piece highlights the critical role of ADS centers in reducing loneliness and social isolation and promoting healthy equity. We also explore the benefits of ADS, the financial, policy, and societal barriers to utilizing ADS, and the potential solutions to ensure its sustainability and growth.
PMCID:11412866
PMID: 39310908
ISSN: 2296-2565
CID: 5739142

An exploration of the domain specificity of maternal sensitivity among a diverse sample in the infancy period: Unique paths to child outcomes

Taraban, Lindsay; Shaw, Daniel S; Morris, Pamela A; Mendelsohn, Alan L
Maternal sensitivity during an observed mother-child clean-up task at 18 months and maternal sensitivity during an observed mother-child free-play task at 18 months were tested as independent predictors of child internalizing symptoms, externalizing symptoms, social competence, and language development at 24 months. Participants (n = 292 mothers) were recruited between 2015 and 2017, and were low-income (mean annual income = $19,136) and racially and ethnically diverse (43.8% Black; 44.2% Latinx). Maternal sensitivity during clean-up was a significant predictor of all social-emotional outcomes, and a unique predictor of child internalizing symptoms. Maternal sensitivity during free-play was a unique predictor of child language. Results suggest that context-specific subtypes of maternal sensitivity may differentially relate to early child outcomes.
PMID: 37612891
ISSN: 1467-8624
CID: 5598662