Ethnicity Data Research Articles

Sexual identity data collection and access in UK population-based studies

Sexual identity data collection and access in UK population-based studies

Linking Ethnicity Targeting with Artificial Intelligence and Data Collection: Perceptions and Behavioral Responses of Black Consumers

Data-centric targeting with artificial intelligence (AI) is transforming advertising by using machine learning and big data to target consumers, creating value for both consumers and brands. Despite the growing interest in ethnicity targeting in social media, there is still much to learn about leveraging ethnicity data for advertising research and practice. In this study, we surveyed 1,030 Black U.S. social media users to explore their understanding of AI and data gathering related to ethnicity. We focused on ethnic affinity targeting (EAT), a controversial tactic used by social media platforms. Our results indicate that the ethical aspects of persuasion knowledge, specifically appropriateness beliefs, affect consumers’ coping strategies through distinct mechanisms. Consumers’ ethnic identification and the stability of their affinity feelings toward social media also influence intentions to use specific coping strategies. These findings suggest that consumers’ perceptions of ethnicity targeting depend on how advertisers collect and use ethnicity data and underscore the importance of diverse perspectives to inform algorithm transparency practices and policies.

SP33. Optimizing Patient Selection for Lympha in Patients with Inflammatory Breast Cancer

PURPOSE: Patients with inflammatory breast cancer (IBC) are at high risk for lymphedema due to their need for axillary lymph node dissection (ALND) and high-dose regional nodal radiation. LYMPHA (Lymphatic Microsurgical Preventive Healing Approach) is increasingly offered for prevention of upper extremity lymphedema after breast cancer treatment. Prior studies focus on intraoperative and postoperative lymphedema risk factors, some of which are unknown preoperatively when the decision to perform LYMPHA is made. This study aimed to identify preoperative lymphedema risk factors in the high-risk IBC population. METHODS: Retrospective review of our institution’s IBC program database was conducted. All patients with IBC who underwent neoadjuvant chemotherapy (NAC) and modified radical mastectomy (MRM) with adjuvant radiation were reviewed. The primary outcome was self-reported lymphedema development. Secondary endpoints were time from IBC diagnosis, mastectomy, or radiation completion to lymphedema diagnosis. Multivariable logistic regression analysis was used to identify preoperative lymphedema risk factors, while controlling for number of lymph nodes removed during ALND, number of positive lymph nodes, presence of residual disease on final pathology, and need for adjuvant systemic therapy. Additionally, the subset of patients who underwent breast reconstruction was reviewed and descriptive statistics of reconstructive techniques performed. RESULTS: Of 356 patients (86% Stage 3, 14% Stage 4) who underwent NAC, MRM and radiation, complete data on risk factors were available for 134 (37.6%). Mean age at diagnosis was 51 years (range 22-89 years). Forty-seven percent of patients developed lymphedema during treatment and 87% had ≥5 lymph nodes removed. Four percent developed lymphedema preoperatively (mean 138 days, median 149 days after IBC diagnosis), 14.6% developed lymphedema after surgery and before radiation (mean 51 days, median 45 days postoperatively), and 81.7% developed lymphedema after radiation (mean 470 days, median 271 days after radiation). Obesity (BMI > 30) (OR 2.7, CI 1.2-6.4, p = 0.02) and non-white race (OR 4.5, CI 1.2-23, p = 0.04) were preoperative risk factors for lymphedema. Reconstruction data was available for 91.3% of patients (n=325). Of these, 78.5% (n=255) did not receive reconstruction. Among those who underwent reconstruction (n=70, 21.5%), most patients were younger than 50 years (n=41, 58.6%). Most who underwent reconstruction were white (n=63, 90.0% versus n=2, 2.86% black and n=5, 7.14% other). Ethnicity data was available for 48 patients (68.6%). The majority of patients were non-Hispanic (n=46, 95.83%). BMI data was available for 48 patients and the majority had BMI <30 (n=29, 60.42%). CONCLUSION: Patients with IBC are at high risk of lymphedema, with 47% of patients in our study developing self-reported lymphedema. While need for NAC, ALND, and PMRT are known risk factors, we identified obesity and non-white race as additional lymphedema risk factors in this population. Given this high prevalence, LYMPHA should be considered for all patients with IBC. Larger, prospective studies are needed to further evaluate potential racial disparities in lymphedema development.

Race and ethnicity data for first, middle, and surnames

We provide the largest compiled publicly available dictionaries of first, middle, and surnames for the purpose of imputing race and ethnicity using, for example, Bayesian Improved Surname Geocoding (BISG). The dictionaries are based on the voter files of six U.S. Southern States that collect self-reported racial data upon voter registration. Our data cover the racial make-up of a larger set of names than any comparable dataset, containing 136 thousand first names, 125 thousand middle names, and 338 thousand surnames. Individuals are categorized into five mutually exclusive racial and ethnic groups — White, Black, Hispanic, Asian, and Other — and racial/ethnic probabilities by name are provided for every name in each dictionary. We provide both probabilities of the form ℙ(race|name) and ℙ(name|race), and conditions under which they can be assumed to be representative of a given target population. These conditional probabilities can then be deployed for imputation in a data analytic task for which self-reported racial and ethnic data is not available.

The accuracy of race & ethnicity data in US based healthcare databases: A systematic review

BackgroundThe availability and accuracy of data on a patient's race/ethnicity varies across databases. Discrepancies in data quality can negatively impact attempts to study health disparities.Methods: We conducted a systematic review to organize information on the accuracy of race/ethnicity data stratified by database type and by specific race/ethnicity categories. ResultsThe review included 43 studies. Disease registries showed consistently high levels of data completeness and accuracy. EHRs frequently showed incomplete and/or inaccurate data on the race/ethnicity of patients. Databases had high levels of accurate data for White and Black patients but relatively high levels of misclassification and incomplete data for Hispanic/Latinx patients. Asians, Pacific Islanders, and AI/ANs are the most misclassified. Systems-based interventions to increase self-reported data showed improvement in data quality. ConclusionData on race/ethnicity that is collected with the purpose of research and quality improvement appears most reliable. Data accuracy can vary by race/ethnicity status and better collection standards are needed.

Prevalence of cardiovascular disease among Asian, Pacific Islander and multi-race populations in Hawai’i and California

BackgroundCardiovascular disease (CVD) remains the leading cause of death in the US. CVD incidence is influenced by many demographic, clinical, cultural, and psychosocial factors, including race and ethnicity. Despite recent research, there remain limitations on understanding CVD health among Asians and Pacific Islanders (APIs), particularly some subgroups and multi-racial populations. Combining diverse API populations into one study group and difficulties in defining API subpopulations and multi-race individuals have hampered efforts to identify and address health disparities in these growing populations.MethodsThe study cohort was comprised of all adult patients at Kaiser Permanente Hawai’i and Palo Alto Medical Foundation in California during 2014–2018 (n = 684,363). EHR-recorded ICD-9 and ICD-10 diagnosis codes were used to indicate coronary heart disease (CHD), stroke, peripheral vascular disease (PVD), and overall CVD. Self-reported race and ethnicity data were used to construct 12 mutually exclusive single and multi-race groups, and a Non-Hispanic White (NHW) comparison group. Logistic regression models were used to derive prevalence estimates, odds ratios, and confidence intervals for the 12 race/ethnicity groups.ResultsThe prevalence of CHD and PVD varied 4-fold and stroke and overall CVD prevalence varied 3-fold across API subpopulations. Among Asians, the Filipino subgroup had the highest prevalence of all three CVD conditions and overall CVD. Chinese people had the lowest prevalence of CHD, PVD and overall CVD. In comparison to Native Hawaiians, Other Pacific Islanders had significantly higher prevalence of CHD. For the multi-race groups that included Native Hawaiians and Other Pacific Islanders, the prevalence of overall CVD was significantly higher than that for either single-race Native Hawaiians or Other Pacific Islanders. The multi-race Asian + White group had significantly higher overall CVD prevalence than both the NHW group and the highest Asian subgroup (Filipinos).ConclusionsStudy findings revealed significant differences in overall CVD, CHD, stroke, and PVD among API subgroups. In addition to elevated risk among Filipino, Native Hawaiian, and Other Pacific Islander groups, the study identified particularly elevated risk among multi-race API groups. Differences in disease prevalence are likely mirrored in other cardiometabolic conditions, supporting the need to disaggregate API subgroups in health research.

Gaps in the Identification of Child Race and Ethnicity in a Pediatric Emergency Department.

Race and ethnicity are social constructs that are associated with meaningful health inequities. To address health disparities, it is essential to have valid, reliable race and ethnicity data. We compared child race and ethnicity as identified by the parent with that reported in the electronic health record (EHR). A convenience sample of parents of pediatric emergency department (PED) patients completed a tablet-based questionnaire (February-May 2021). Parents identified their child's race and ethnicity from options within a single category. We used chi-square to compare concordance between child race and ethnicity reported by the parent with that recorded in the EHR. Of 219 approached parents, 206 (94%) completed questionnaires. Race and/or ethnicity were misidentified in the EHR for 56 children (27%). Misidentifications were most common among children whose parents identified them as multiracial (100% vs 15% of children identified as a single race, P < 0.001) or Hispanic (84% vs 17% of non-Hispanic children, P < 0.001), and children whose race and/or ethnicity differed from that of their parent (79% vs 18% of children with the same race and ethnicity as their parent, P < 0.001). In this PED, misidentification of race and ethnicity was common. This study provides the basis for a multifaceted quality improvement effort at our institution. The quality of child race and ethnicity data in the emergency setting warrants further consideration across health equity efforts.

Early infection risk in patients with systemic lupus erythematosus treated with rituximab or belimumab from the British Isles Lupus Assessment Group Biologics Register (BILAG-BR): a prospective longitudinal study.

Patients with systemic lupus erythematosus (SLE) are at an increased risk of infection relative to the general population. We aimed to describe the frequency and risk factors for serious infections in patients with moderate-to-severe SLE treated with rituximab, belimumab, and standard of care therapies in a large national observational cohort. The British Isles Lupus Assessment Group Biologics Register (BILAG-BR) is a UK-based prospective register of patients with SLE. Patients were recruited by their treating physician as part of their scheduled care from 64 centres across the UK by use of a standardised case report form. Inclusion criteria for the BILAG-BR included age older than 5 years, ability to provide informed consent, a diagnosis of SLE, and starting a new biological therapy within the last 12 months or a new standard of care drug within the last month. The primary outcome for this study was the rate of serious infections within the first 12 months of therapy. Serious infections were defined as those requiring intravenous antibiotic treatment, hospital admission, or resulting in morbidity or death. Infection and mortality data were collected from study centres and further mortality data were collected from the UK Office for National Statistics. The relationship between serious infection and drug type was analysed using a multiple-failure Cox proportional hazards model. Between July 1, 2010, and Feb 23, 2021, 1383 individuals were recruited to the BILAG-BR. 335 patients were excluded from this analysis. The remaining 1048 participants contributed 1002·7 person-years of follow-up and included 746 (71%) participants on rituximab, 119 (11%) participants on belimumab, and 183 (17%) participants on standard of care. The median age of the cohort was 39 years (IQR 30-50), 942 (90%) of 1048 patients were women and 106 (10%) were men. Of the patients with available ethnicity data, 514 (56%) of 911 were White, 169 (19%) were Asian, 161 (18%) were Black, and 67 (7%) were of multiple-mixed or other ethnic backgrounds. 118 serious infections occurred in 76 individuals during the 12-month study period, which included 92 serious infections in 58 individuals on rituximab, eight serious infections in five individuals receiving belimumab, and 18 serious infections in 13 individuals on standard of care. The overall crude incidence rate of serious infection was 117·7 (95% CI 98·3-141·0) per 1000 person-years. Compared with standard of care, the serious infection risk was similar in the rituximab (adjusted hazard ratio [HR] 1·68 [0·60-4·68]) and belimumab groups (1·01 [0·21-4·80]). Across the whole cohort in multivariate analysis, serious infection risk was associated with prednisolone dose (>10 mg; 2·38 [95%CI 1·47-3·84]), hypogammaglobulinaemia (<6 g/L; 2·16 [1·38-3·37]), and multimorbidity (1·45 [1·17-1·80]). Additional concomitant immunosuppressive use appeared to be associated with a reduced risk (0·60 [0·41-0·90]). We found no significant safety signals regarding atypical infections. Six infection-related deaths occurred at a median of 121 days (IQR 60-151) days from cohort entry. In patients with moderate-to-severe SLE, rituximab, belimumab, and standard immunosuppressive therapy have similar serious infection risks. Key risk factors for serious infections included multimorbidity, hypogammaglobulinaemia, and increased glucocorticoid doses. When considering the risk of serious infection, we propose that immunosupppressives, rituximab, and belimumab should be prioritised as mainstay therapies to optimise SLE management and support proactive minimisation of glucocorticoid use. None.

Association of Gestational Diabetes Mellitus Recurrence With Race and Ethnicity [ID: 1375479

INTRODUCTION: To assess whether there is an association between race and ethnicity with recurrence of gestational diabetes mellitus (GDM) among pregnant persons with a history of GDM in a prior pregnancy. METHODS: This was a retrospective cohort study of births between 2000 and 2012 to pregnant persons in California with a history of GDM in a prior pregnancy. We included singleton, nonanomalous births at gestational ages 23–42 weeks and excluded those who developed preexisting diabetes mellitus between pregnancies or with missing data for race and ethnicity. We adjusted for body mass index, age, educational attainment, and insurance type. Statistical analyses were performed using chi-square and multivariable logistic regression with a P value of .05. RESULTS: We included 26,903 births in this analysis. There were significant differences for all sociodemographic characteristics by recurrence of GDM. The highest proportion of pregnant persons with GDM recurrence were non-Hispanic Asian (55%), followed by Hispanic (51%). We found that the adjusted odds of GDM recurrence was higher among Hispanic (odds ratio [OR] 1.24, 95% CI 1.14–1.35) and non-Hispanic Asian (OR 1.93, 95% CI 1.76–2.11) individuals than the referent, while there was no difference in the adjusted odds of GDM recurrence for non-Hispanic Black (OR 0.99, 95% CI 0.83–1.18) or non-Hispanic American Native (OR 0.99, 95% CI 0.58–1.69) individuals. CONCLUSION: We found that among pregnant persons with a history of GDM, there was a higher adjusted odds of GDM recurrence among certain racial and ethnic groups. Future studies should assess this disparity with targeted interventions to mitigate this increased risk among these specific populations.

Quantifying structural racism in cohort studies to advance prospective evidence

Calls-to-action in health research have described a need to improve research on race, ethnicity, and structural racism. Well-established cohort studies typically lack access to novel structural and social determinants of health (SSDOH) or precise race and ethnicity categorization, contributing to a loss of rigor to conduct informative analyses and a gap in prospective evidence on the role of structural racism in health outcomes. We propose and implement methods that prospective cohort studies can use to begin to rectify this, using the Women's Health Initiative (WHI) cohort as a case study. To do so, we evaluated the quality, precision, and representativeness of race, ethnicity, and SSDOH data compared with the target US population and operationalized methods to quantify structural determinants in cohort studies. Harmonizing racial and ethnic categorization to the current standards set by the Office of Management and Budget improved measurement precision, aligned with published recommendations, disaggregated groups, decreased missing data, and decreased participants reporting “some other race”. Disaggregation revealed sub-group disparities in SSDOH, including a greater proportion of Black-Latina (35.2%) and AIAN-Latina (33.3%) WHI participants with income below the US median compared with White-Latina (42.5%) participants. We found similarities in the racial and ethnic patterning of SSDOH disparities between WHI and US women but less disparity overall in WHI. Despite higher individual-level advantage in WHI, racial disparities in neighborhood resources were similar to the US, reflecting structural racism. Median neighborhood income was comparable between Black WHI ($39,000) and US ($34,700) women. WHI SSDOH-associated outcomes may be generalizable on the basis of comparing across race and ethnicity but may quantitatively (but not qualitatively) underestimate US effect sizes. This paper takes steps towards data justice by implementing methods to make visible hidden health disparity groups and operationalizing structural-level determinants in prospective cohort studies, a first step to establishing causality in health disparities research.

Exposure to Neighborhood Racialized Economic Segregation and Reinjury and Violence Perpetration Among Survivors of Violent Injuries

Much is unknown about how individual and neighborhood factors converge in the association with risk for violent reinjury and violence perpetration. To investigate the association of exposure to neighborhood racialized economic segregation with reinjury and use of violence against others among survivors of violent penetrating injury. This retrospective cohort study was performed using data obtained from hospital, police, and state vital records. The study was performed at Boston Medical Center, an urban, level I trauma center that is the largest safety-net hospital and busiest trauma center in New England. The cohort included all patients treated for a nonfatal violent penetrating injury from 2013 to 2018. Patients with no Boston metropolitan area home address were excluded. Individuals were followed up through 2021. Data were analyzed from February to August 2022. American Community Survey data were used to measure neighborhood deprivation using the racialized economic Index of Concentration at the Extremes (ICE) for patient residential address upon hospital discharge. ICE was measured on a scale from -1 (most deprived) to 1 (most privileged). Primary outcomes were violent reinjury and police-reported perpetration of violence within 3 years of an index injury. Of 1843 survivors of violence (median [IQR] age, 27 [22-37] years; 1557 men [84.5%]; 351 Hispanic [19.5%], 1271 non-Hispanic Black [70.5%], and 149 non-Hispanic White [8.3%] among 1804 patients with race and ethnicity data), the cohort was skewed toward residing in neighborhoods with higher racialized economic segregation (median [IQR] ICE = -0.15 [-0.22 to 0.07]) compared with the state overall (ICE = 0.27). There were police encounters for violence perpetration among 161 individuals (8.7%) and violent reinjuries among 214 individuals (11.6%) within 3 years after surviving a violent penetrating injury. For each 0.1-unit increase in neighborhood deprivation, there was a 13% (hazard ratio [HR], 1.13; 95% CI, 1.03 to 1.25; P = .01) increase in risk of violence perpetration but no difference in risk for violent reinjury (HR, 1.03; 95% CI, 0.96 to 1.11; P = .38). The greatest occurrence for each outcome was within the first year after index injury; for example, incidents of violence perpetration occurred among 48 of 614 patients (7.8%) at year 1 vs 10 of 542 patients (1.8%) at year 3 in tertile 3 of neighborhood deprivation. This study found that living in a more economically deprived and socially marginalized area was associated with increased risk of using violence against others. The finding suggests that interventions may need to include investments in neighborhoods with the highest levels of violence to help reduce downstream transmission of violence.

Multi-registry Analysis of Patients with Multiple Sclerosis (MS) and Neuromyelitis Optica (NMO) to Improve Capture of Demographic Data and Compare Visual Outcomes (P2-9.006)

<h3>Objective:</h3> To combine American Academy of Neurology Axon Registry® data and American Academy of Ophthalmology IRIS® Registry (Intelligent Research in Sight) data to reduce missingness of demographic information and characterize visual outcomes in patients with MS and NMO. <h3>Background:</h3> The Axon Registry provides real-world data for patients with MS and NMO. However, some data are incomplete (e.g. demographics) and some relevant outcomes are not systematically captured in neurology documentation (e.g. visual acuity [VA]). The IRIS Registry contains demographic and visual function data that may complement Axon Registry-derived data to enhance understanding of real-world outcomes. <h3>Design/Methods:</h3> In this cross-sectional study, participants were included if they had repeated ICD-9/10 codes for MS or NMO in the Axon Registry and overlapped temporally in both registries. Age, sex, race, ethnicity and US census region were extracted and classified as conflicting, missing, and not missing in the combined data set. The IRIS Registry contributed VA data. <h3>Results:</h3> Among 60,316 patients with MS and 1,068 patients with NMO in the Axon Registry, 14,085 and 252 had temporal overlap in the IRIS Registry. When we combined data for the MS cohort, there was a 9–18% absolute reduction in missing or conflicting data for race, ethnicity, and location (all p=&lt;0.0005, McNemar), but not age (p=1.0, McNemar) or sex (p=0.08, McNemar). For patients in both registries, 10,907 with MS and 142 with NMO had VA data. VA was worse in patients with NMO (0.17 logMAR, 95%CI 0.12,0.21, p&lt;0.0005, linear model with age, gender). <h3>Conclusions:</h3> Using data from two registries reduced missing data for race, ethnicity and location and enabled examination of outcomes captured in the IRIS Registry for conditions that are diagnosed more frequently in the Axon Registry, demonstrating the utility of a multi-registry analysis. <b>Disclosure:</b> Dr. Moss has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Twenty Twenty Therapeutics. Dr. Moss has received personal compensation in the range of $100,000-$499,999 for serving as a Consultant for Verana Health. Dr. Moss has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Medlink Inc. Dr. Moss has received personal compensation in the range of $10,000-$49,999 for serving as an Expert Witness for Legal Firms. The institution of Dr. Moss has received research support from NIH. The institution of Dr. Moss has received research support from Department of Defense. The institution of Dr. Moss has received research support from Research to Prevent Blindness. Dr. Moss has received personal compensation in the range of $0-$499 for serving as a grant review panel with NASA. Dr. Moss has received personal compensation in the range of $0-$499 for serving as a grant review panel with National Institutes of Health. Dr. Moss has a non-compensated relationship as a Board of Directors with North American Neuro-ophthalmology Society that is relevant to AAN interests or activities. Lauren Wiener has received personal compensation for serving as an employee of Verana Health. Ms. Rizy has received personal compensation for serving as an employee of Verana Health. Ms. Rizy has stock in Verana Health. Dr. Baxi has received personal compensation for serving as an employee of Verana health . Dr. Kocher has received personal compensation for serving as an employee of Verana Health. Dr. Torres has received personal compensation for serving as an employee of Verana Health. Dr. Mbagwu has received personal compensation for serving as an employee of Verana Health. Dr. Mbagwu has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Verana Health. Dr. Mbagwu has received research support from Stanford University. Dr. Mbagwu has received intellectual property interests from a discovery or technology relating to health care.

Challenges in recording race and ethnicity data in biomedical research: the French and Swedish perspectives.

aSorbonne Universite, AP-HP, Hopital Saint Antoine, Service d’Accueil des Urgences, INSERM, Institut Pierre Louis d’Epidemiologie et de Sante Publique, Paris bCNCR (Comité National de Coordination de la Recherche), France cEmergency Medicine, Department of Clinical Sciences Malmö, Lund University, Skane University Hospital, Malmö, Sweden Received 17 March 2023 Accepted 27 March 2023. Correspondence to Youri Yordanov, PhD, Emergency Medicine, Sorbonne Universite, AP-HP, Hopital Saint Antoine, Service d’Accueil des Urgences, INSERM, Institut Pierre Louis d’Epidemiologie et de Sante Publique, 184 Rue du Faubourg Saint-Antoine, Paris 75012, France, Tel: +33 616177059; e-mail: [email protected]

Association Between Material Hardship in Families With Young Children and Federal Relief Program Participation by Race and Ethnicity and Maternal Nativity

Even brief periods of hardship during early childhood may have lifelong consequences. Prior cross-sectional research limited to respondents with English proficiency and internet access during the COVID-19 crisis documented families with young children that struggled to afford basic needs like food and rent. Few studies have examined experiences of families with young children by race and ethnicity and maternal nativity. To examine the association of COVID-19 relief programs with the mitigation of household food insecurity among families with young children, as well as being behind on rent and disparities in program receipt. This cohort study used data from the ongoing repeat cross-sectional Children's HealthWatch study comprising families surveyed at baseline (January 1, 2018, to March 20, 2020) and during the COVID-19 crisis (September 1, 2020, to June 30, 2021). Baseline questionnaires were administered face to face to caregivers of children aged 48 months or younger in English or Spanish in emergency departments or primary care clinics in 5 US cities. The follow-up questionnaires were administered via telephone. Supplemental Nutrition Assistance Program (SNAP) participation or receipt of at least 1 Economic Impact Payment (EIP; ie, stimulus check) during the COVID-19 crisis. The primary outcomes were household food insecurity (assessed via the US Household Food Security Survey Module: Six-Item Short Form) and being behind on rent. Logistic and binomial regression models were used to calculate adjusted odds ratios (aORs) and unadjusted and adjusted prevalence ratios (PRs). Of 1396 caregiver-child dyads (20.3% response rate), race and ethnicity data were available for 1357 caregivers: 514 (37.9%) were Black, non-Latino; 558 (41.1%) were Latino; 230 (16.9%) were White, non-Latino; and 55 (4.1%) were of other non-Latino race or ethnicity. Among 1390 responses with nonmissing data, 417 children (30.0%) had an immigrant mother, and among 1388 responses, 1238 (33.5%) were publicly insured. During the crisis, 467 of 1395 respondents (33.5%) reported household food insecurity, and 567 of 1391 respondents (40.8%) reported being behind on rent. Families with immigrant mothers had lower odds of EIP and SNAP participation than families with US-born mothers (eg, aOR, 0.07 [95% CI, 0.05-0.12] for both EIP and SNAP vs neither), despite being more likely to report household food insecurity (adjusted PR [aPR], 1.48 [95% CI, 1.28-1.71]) and being behind on rent (aPR, 1.14 [95% CI, 1.00-1.30]). Families with Black (unadjusted PR [uPR], 1.40 [95% CI, 1.08-1.82]) or Latino (uPR, 1.54 [95% CI, 1.19-1.98]) caregivers or caregivers of other race and ethnicity (uPR, 1.67 [1.12-2.49]) were also more likely than families with White, non-Latino caregivers to experience household food insecurity or being behind on rent (families with Black caregivers: uPR, 2.02 [95% CI, 1.58-2.58]; families with Latino caregivers: 1.68 [95% CI, 1.30-2.16]; families with caregivers of other race or ethnicity: uPR, 1.94 [95% CI, 1.34-2.80]). Adjustment for covariates and differential participation in relief programs did not entirely account for these disparities. The results of this cohort study suggest that the COVID-19 crisis exacerbated preexisting inequities in food insecurity and difficulty paying rent according to race and ethnicity and maternal nativity and that equity-focused policy changes are needed to ensure that all children and their families in the US can afford basic needs for optimal health.

Life Stressors During Pregnancy in Women With Epilepsy: Results From the Pregnancy Risk Assessment Monitoring System.

To compare specific life stressors and domestic abuse that pregnant women and others with epilepsy (WWE) experience compared with pregnant women and others without epilepsy (WWoE). The Pregnancy Risk Assessment Monitoring System (PRAMS) is an annual weighted survey of randomly sampled postpartum women administered by the Centers for Disease Control and Prevention. We used data from the PRAMS from 2012 to 2020 in 13 states to assess the life stressors reported by WWE compared with WWoE. We adjusted the data for maternal age, race, ethnicity, marital status, education, and socioeconomic status (SES; using income, Women, Infants, and Children program [WIC], and Medicaid use). We also examined reported abuse in WWE compared with WWoE. This study included data from 64,951 postpartum women, representing 4,072,189 women through weighted sampling. Of these, 1,140 reported having a diagnosis of epilepsy in the 3 months before their pregnancies (representing 81,021 WWE). WWE experienced a higher number of stressors compared with WWoE. WWE were more likely to have experienced 9 of the 14 stressors asked in the PRAMS questionnaire: severe illness of a close family member, separation or divorce, homelessness, loss of a partner's job, cut in work hours or pay, arguing more than usual with their partner, serving jail time, substance abuse problem in a close contact, and death of a close contact. After adjusting for demographics (age, race, and SES), epilepsy was still associated with a higher number of stressors in pregnant women. Other factors associated with stressors were younger age, Indigenous or mixed race, non-Hispanic ethnicity, lower income, and WIC or Medicaid use. Those who were married were less likely to report stressors. WWE were also more likely to report abuse before or during their pregnancies. Although managing stress is important in both epilepsy and pregnancy, WWE experience more stressors than do WWoE. After adjusting for maternal age, race, and SES, this increase in stressors persisted. Women who were younger, with lower income, on WIC or Medicaid, or not married were also more likely to experience life stressors. Alarmingly, reported abuse was also higher in WWE compared with WWoE. Attention from clinicians and support services for WWE are needed to optimize good pregnancy outcomes.

The Lack of Race and Ethnicity Data in Australia—A Threat to Achieving Health Equity

Collecting meaningful race and ethnicity data must be part of the national agenda and must be one of its primary objectives in order to achieve public good and support public interests. Yet, Australia does not collect data on race and ethnicity, and prefers the use of collective cultural groups, whose information is not consistently collected and reported at all levels of government and service delivery. This paper examines the current discrepancies in race and ethnicity data collection in Australia. The paper begins with examining the current practices related to collecting race and ethnicity data and then moves on to examine the various implications and public health significance of not collecting data on race and ethnicity in Australia. The evidence suggests that (1) race and ethnicity data matter, are imperative to ensuring proper advocacy and to reducing inequities in health and social determinant factors; (2) that White privilege is constructed as realized or unrealized personal and systemic racism; and (3) the use of non-committal collective terminologies makes visible minorities invisible, leads to the distorted allocation of governmental support, and legitimises and institutionalises racism and othering, hence perpetuating exclusion and the risk of victimisation. There is an urgent need for the collection of customized, culturally competent racial and ethnicity data that can be consistently integrated into all policy interventions, service delivery and research funding across all levels of governance in Australia. Reducing and eliminating racial and ethnic disparities is not only an ethical, social, and economic imperative, but must also be a critical item on the national agenda. Bridging the racial and ethnic disparities will require concerted whole-of-government efforts to collect consistent and reliable data that depict racial and ethnic characteristics beyond collective cultural groupings.

Assessing an electronic self-report method for improving quality of ethnicity and race data in the Veterans Health Administration.

Evaluate self-reported electronic screening (eScreening) in a VA Transition Care Management Program (TCM) to improve the accuracy and completeness of administrative ethnicity and race data. We compared missing, declined, and complete (neither missing nor declined) rates between (1) TCM-eScreening (ethnicity and race entered into electronic tablet directly by patient using eScreening), (2) TCM-EHR (Veteran-completed paper form plus interview, data entered by staff), and (3) Standard-EHR (multiple processes, data entered by staff). The TCM-eScreening (n = 7113) and TCM-EHR groups (n = 7113) included post-9/11 Veterans. Standard-EHR Veterans included all non-TCM Gulf War and post-9/11 Veterans at VA San Diego (n = 92 921). Ethnicity: TCM-eScreening had lower rates of missingness than TCM-EHR and Standard-EHR (3.0% vs 5.3% and 8.6%, respectively, P < .05), but higher rates of "decline to answer" (7% vs 0.5% and 1.2%, P < .05). TCM-EHR had higher data completeness than TCM-eScreening and Standard-EHR (94.2% vs 90% and 90.2%, respectively, P < .05). Race: No differences between TCM-eScreening and TCM-EHR for missingness (3.5% vs 3.4%, P > .05) or data completeness (89.9% vs 91%, P > .05). Both had better data completeness than Standard-EHR (P < .05), which despite the lowest rate of "decline to answer" (3%) had the highest missingness (10.3%) and lowest overall completeness (86.6%). There was strong agreement between TCM-eScreening and TCM-EHR for ethnicity (Kappa = .92) and for Asian, Black, and White Veteran race (Kappas = .87 to .97), but lower agreement for American Indian/Alaska Native (Kappa = .59) and Native Hawaiian/Other Pacific Islander (Kappa = .50) Veterans. eScreening is a promising method for improving ethnicity and race data accuracy and completeness in VA.

Diversity in German science: researchers push for missing ethnicity data.

Diversity in German science: researchers push for missing ethnicity data.

The impact of COVID-19 on heart failure admissions in Suriname-A call for action

IntroductionDuring the height of the COVID-19 pandemic, there was a worldwide reorganization of healthcare systems focusing on limiting the spread of the virus. The impact of these measures on heart failure (HF) admissions is scarcely reported in Low and Middle Income Countries (LMICs) including Suriname. We therefore assessed HF hospitalizations before and during the pandemic and call for action to improve healthcare access in Suriname through the development and implementation of telehealth strategies. MethodsRetrospectively collected clinical (# hospitalizations per patient, in hospital mortality, comorbidities) and demographic (sex, age, ethnicity) data of people hospitalized with a primary or secondary HF discharge ICD10 code in the Academic Hospital Paramaribo (AZP) from February to December 2019 (pre-pandemic) and February to December 2020 (during the pandemic) were used for analysis. Data are presented as frequencies with corresponding percentages. T-tests were used to analyze continuous variables and the two-sample test for proportions for categorical variables. ResultsThere was an overall slight decrease of 9.1% HF admissions (N pre-pandemic:417 vs N during the pandemic: 383). Significantly less patients (18.3%, p-value<0.00) were hospitalized during the pandemic (N: 249 (65.0%)) compared to pre-pandemic (N: 348 (83.3%)), while readmissions increased statistically significantly for both readmissions within 90 days (75 (19.6%) vs 55 (13.2%), p-value = 0.01) and readmissions within 365 days (122 (31.9%) vs 70 (16.7%), p-value = 0.00) in 2020 compared to 2019. Patients admitted during the pandemic also had significantly more of the following comorbidities: hypertension (46.2% vs 30.6%, p-value = 0.00), diabetes (31.9% vs 24.9%, p-value = 0.03) anemia (12.8% vs 3.1%, p-value = 0.00), and atrial fibrillation (22.7% vs 15.1%, p-value = 0.00). ConclusionHF admissions were reduced during the pandemic while HF readmissions increased compared to the pre-pandemic period. Due to in-person consultation restrictions, the HF clinic was inactive during the pandemic period. Distance monitoring of HF patients via telehealth tools could help in reducing these adverse effects. This call for action identifies key elements (digital and health literacy, telehealth legislation, integration of telehealth tools within the current healthcare sector) needed for the successful development and implementation of these tools in LMICs.

PD20-01 CLINICAL TRIAL REPORTING AND REPRESENTATION OF RACE AND ETHNICITY IN UROLOGY 2007-2020

You have accessJournal of UrologyCME1 Apr 2023PD20-01 CLINICAL TRIAL REPORTING AND REPRESENTATION OF RACE AND ETHNICITY IN UROLOGY 2007-2020 Christopher J. Magnani, Brandon E. Turner, Jecca R. Steinberg, Xinyuan Zhang, Ryan Brewster, Jason Qian, Alexander P. Cole, Conor Driscoll, Alexander Bell, Brannon T. Weeks, Tina Hernandez-Boussard, James D. Brooks, Kymora Scotland, Quoc-Dien Trinh, and Elodi J. Dielubanza Christopher J. MagnaniChristopher J. Magnani More articles by this author , Brandon E. TurnerBrandon E. Turner More articles by this author , Jecca R. SteinbergJecca R. Steinberg More articles by this author , Xinyuan ZhangXinyuan Zhang More articles by this author , Ryan BrewsterRyan Brewster More articles by this author , Jason QianJason Qian More articles by this author , Alexander P. ColeAlexander P. Cole More articles by this author , Conor DriscollConor Driscoll More articles by this author , Alexander BellAlexander Bell More articles by this author , Brannon T. WeeksBrannon T. Weeks More articles by this author , Tina Hernandez-BoussardTina Hernandez-Boussard More articles by this author , James D. BrooksJames D. Brooks More articles by this author , Kymora ScotlandKymora Scotland More articles by this author , Quoc-Dien TrinhQuoc-Dien Trinh More articles by this author , and Elodi J. DielubanzaElodi J. Dielubanza More articles by this author View All Author Informationhttps://doi.org/10.1097/JU.0000000000003286.01AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: To assess reporting and representation of race and ethnicity in United States (US) based clinical trials focused on urology. METHODS: We performed a cross-sectional study of US based trials (2007-2020) with results reported to the ClinicalTrials.gov registry. We examined whether race and ethnicity data were reported, evaluated changes over time with Mann-Kendall trend test, and compared race and ethnicity representation (proportion of enrolled participants reported as White, Black, Hispanic, Asian, or Native American) within trial funding sponsor (Industry, US Government, Academic) and urologic subspecialty (Oncology, Andrology, Endourology, Female, General Urology, Pediatrics, Renal Transplant). RESULTS: Of 9,015 urologic trials, 39.7% (3,583) were US-based of which 837 (23.4%) reported results to the registry. 417 (49.8%) reported any race and ethnicity data, involving 37,465 participants. Reporting increased over time (Figure 1, p<0.001). Reporting was significantly associated with sponsor (p<0.001, US Government outperforming Industry and Academic) and subspecialty (p=0.02, highest with Oncology and lowest with Endourology and General Urology) (Table). Racial and ethnic minorities (15.0%) were underrepresented relative to US Census data (27.6%), most notable with Hispanic patients (3.6% vs 15.4%, respectively). Trial diversity was significantly associated with subspecialty (p<0.001) but not sponsor (p=0.18). Oncology (13.3%) and Female (12.7%) had the least trial diversity while Pediatrics (30.6%) and Renal Transplant (41.0%) were the most diverse. CONCLUSIONS: Inadequate reporting of race and ethnicity data in clinical trials impedes understanding of barriers to trial diversity. Reported data demonstrates urologic clinical trials are not representative of the US population. This lack of representation perpetuates health disparities, with serious repercussions for underrepresented groups and for the field as a whole. Urology as a field should strive to improve diversity in clinical trial enrollment. Source of Funding: None © 2023 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 209Issue Supplement 4April 2023Page: e583 Advertisement Copyright & Permissions© 2023 by American Urological Association Education and Research, Inc.MetricsAuthor Information Christopher J. Magnani More articles by this author Brandon E. Turner More articles by this author Jecca R. Steinberg More articles by this author Xinyuan Zhang More articles by this author Ryan Brewster More articles by this author Jason Qian More articles by this author Alexander P. Cole More articles by this author Conor Driscoll More articles by this author Alexander Bell More articles by this author Brannon T. Weeks More articles by this author Tina Hernandez-Boussard More articles by this author James D. Brooks More articles by this author Kymora Scotland More articles by this author Quoc-Dien Trinh More articles by this author Elodi J. Dielubanza More articles by this author Expand All Advertisement PDF downloadLoading ...