BACKGROUND: Guidelines recommend tailored reproductive health counseling for women with congenital heart defects (CHDs) beginning in adolescence, yet provider adherence to recommendations remains understudied, particularly outside specialized cardiac care settings. STUDY DESIGN: We conducted a cross-sectional cohort study among women aged 19 to 38 with CHDs, identified from active population-based birth defects registries in three states. Participants completed surveys from 2016 to 2019, including questions about contraception, pregnancy counseling, concerns, and experiences. Multivariable Poisson regression, adjusted for sociodemographic and health characteristics, assessed associations between CHD severity, counseling, and reproductive health outcomes. RESULTS: Of 765 women, those with severe CHDs, compared with non-severe, were more likely to report receiving clinician counseling about safe contraceptive methods (44.0% and 13.7%; adjusted prevalence ratio [aPR] = 3.0; 95% confidence interval [95% CI] [2.2, 4.0]), pregnancy, (63.3% and 16.5%; aPR = 3.6; 95% CI [2.7, 4.6]), and pregnancy avoidance (32.0% and 6.4%; aPR = 4.3; 95% CI [2.9, 6.6]); be concerned about ability to have children (40.9% and 31.2%; aPR = 1.4; 95% CI [1.1, 1.8]), and delay/avoid pregnancy (26.6% and 10.7%; aPR = 2.2; 95% CI [1.5, 3.2]). No disparity was found in ever being pregnant (30.0% vs. 37.2%; aPR = 1.0; 95% CI [0.7, 1.2]). One-third of the respondents with any CHD reported concerns about their ability to have children (33.6%). CONCLUSION: We found that only a minority of women with CHDs reported receiving counseling on safe contraception and pregnancy, and about a third reported concerns about their ability to have children. These findings highlight a gap between guideline recommendations and clinical practice, underscoring the need for improved reproductive health discussions for women with CHDs.

Background: Guidelines recommend tailored reproductive health counseling for women with congenital heart defects (CHDs) beginning in adolescence, yet provider adherence to recommendations remains understudied, particularly outside specialized cardiac care settings. Study Design: We conducted a cross-sectional cohort study among women aged 19 to 38 with CHDs, identified from active population-based birth defects registries in three states. Participants completed surveys from 2016 to 2019, including questions about contraception, pregnancy counseling, concerns, and experiences. Multivariable Poisson regression, adjusted for sociodemographic and health characteristics, assessed associations between CHD severity, counseling, and reproductive health outcomes. Results: Of 765 women, those with severe CHDs, compared with non-severe, were more likely to report receiving clinician counseling about safe contraceptive methods (44.0% and 13.7%; adjusted prevalence ratio [aPR] = 3.0; 95% confidence interval [95% CI] [2.2, 4.0]), pregnancy, (63.3% and 16.5%; aPR = 3.6; 95% CI [2.7, 4.6]), and pregnancy avoidance (32.0% and 6.4%; aPR = 4.3; 95% CI [2.9, 6.6]); be concerned about ability to have children (40.9% and 31.2%; aPR = 1.4; 95% CI [1.1, 1.8]), and delay/avoid pregnancy (26.6% and 10.7%; aPR = 2.2; 95% CI [1.5, 3.2]). No disparity was found in ever being pregnant (30.0% vs. 37.2%; aPR = 1.0; 95% CI [0.7, 1.2]). One-third of the respondents with any CHD reported concerns about their ability to have children (33.6%). Conclusion: We found that only a minority of women with CHDs reported receiving counseling on safe contraception and pregnancy, and about a third reported concerns about their ability to have children. These findings highlight a gap between guideline recommendations and clinical practice, underscoring the need for improved reproductive health discussions for women with CHDs. © 2025 Jacobs Institute of Women's Health, George Washington University

BACKGROUND: International Classification of Disease (ICD) codes can accurately identify patients with certain congenital heart defects (CHDs). In ICD-defined CHD data sets, the code for secundum atrial septal defect (ASD) is the most common, but it has a low positive predictive value for CHD, potentially resulting in the drawing of erroneous conclusions from such data sets. Methods with reduced false positive rates for CHD among individuals captured with the ASD ICD code are needed for public health surveillance. METHODS: We propose a two-level classification system, which includes a CHD and an ASD classification model, to categorize cases with an ASD ICD code into three groups: ASD, other CHD, or no CHD (including patent foramen ovale). In the proposed approach, a machine learning model that leverages structured data is combined with a text classification system. We compare performances for three text classification strategies: support vector machines (SVMs) using text-based features, a robustly optimized Transformer-based model (RoBERTa), and a scalable tree boosting system using non-text-based features (XGBoost). RESULTS: Using SVM for both CHD and ASD resulted in the best performance for the ASD and no CHD group, achieving F(1) scores of 0.53 (±0.05) and 0.78 (±0.02), respectively. XGBoost for CHD and SVM for ASD classification performed best for the other CHD group (F(1) score: 0.39 [±0.03]). CONCLUSIONS: This study demonstrates that it is feasible to use patients' clinical notes and machine learning to perform more fine-grained classification compared to ICD codes, particularly with higher PPV for CHD. The proposed approach can improve CHD surveillance.

BACKGROUND: Our objective was to characterize the education and employment history of young adults with congenital heart defects (CHD) living in the United States. METHODS: The 2016-2019 Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG collected data from young adults (ages 19-38) with CHD identified from active birth defect in Arkansas, Arizona, and Atlanta, Georgia. Educational attainment, employment history, and special education between kindergarten and 12th grade were self-/proxy-reported. Respondent percentages were standardized to the eligible population by CHD severity, birth year, site, sex, and maternal race/ethnicity and compared by CHD severity using p values from Z-scores. Log-binomial prevalence ratios (aPRs) assessed associations between respondent characteristics and outcomes, adjusting for CHD severity, age group, sex, race/ethnicity, and site. Employment models also adjusted for education. Point estimates were compared to the 2018 American Community Survey (ACS) 5-year general population estimates. RESULTS: Among 1438 respondents, 28.3% attained ≥ bachelor's degree and 22.1% were unemployed for ≥ 12 months. Estimates were comparable by CHD severity (aPRs ~1.0) and similar to general population estimates (in ACS, 21% attained ≥ bachelor's degree and 26% were unemployed). About 25.3% of adults with CHD received special education, more commonly adults with severe (32.9%) than nonsevere CHD (23.5%, p = 0.01). CONCLUSIONS: Among young adults with CHD, educational attainment and employment did not substantially differ by CHD severity or from general population rates. One in four used special education between kindergarten and 12th grade. Clinical guidelines recommend ongoing educational and vocational support to individuals with CHD as needed so this population continues to thrive.

BACKGROUND: Almost half of individuals born with Down syndrome (DS) have congenital heart defects (CHDs). Yet, little is known about the health and healthcare needs of adults with CHDs and DS. Therefore, we examined comorbidities and healthcare utilization of this population. METHODS: Data were from the 2016-2019 Congenital Heart Survey to Recognize Outcomes, Needs, and well-beinG (CH STRONG), a survey of 19-38-year-olds with CHDs identified through birth defects registries in Arkansas, Arizona, and Atlanta. Outcome estimates were standardized to the CH STRONG eligible population. Multivariable Poisson regression generated adjusted prevalence ratios (aPRs) for associations between DS and each outcome, adjusting for covariates, including CHD severity. RESULTS: Among 1500 respondents, 9.1% had DS. Compared to those without DS, respondents with DS were more commonly male (55.5% vs. 45.0%), < 25 years old (51.8% vs. 42.7%), non-Hispanic White (72.3% vs. 69.3%), and publicly insured (77.4% vs. 22.8%; all p < 0.05). Of adults with CHDs and DS, 5.5% had cardiac comorbidities, 19.3% had emergency room (ER) visits, 6.2% had hospital admissions, and 1.2% had cost-related delays in care in the last year; 0.1 to 0.6 times lower than adults with CHDs without DS. Additionally, 26.7% had non-cardiac comorbidities (aPR = 1.25 [0.92-1.72]), most commonly sleep apnea (13.7% vs. 3.2%, aPR = 3.67 [2.02-6.67]). Receipt of cardiology care in the last 2 years was similarly low (52.7% vs. 44.7%). CONCLUSIONS: Adults with CHDs and DS comprise a substantial percentage of adults with CHDs and have unique health and healthcare needs. Half of adults with CHDs and DS are not receiving recommended routine cardiac care.

In April 2023, an outbreak of acute hepatitis was reported in the Nazareth internally displaced persons camp in South Sudan. IgM serology-based screening suggested the likely etiologic agent to be Hepatitis E virus (HEV). In this study, plasma specimens collected from anti-HEV IgM-positive cases were subjected to additional RT-qPCR testing and sequencing of extracted nucleic acids, resulting in the recovery of five full and eight partial HEV genomes. Maximum likelihood phylogenetic reconstruction confirmed the genomes belong to HEV genotype 1. Using distance-based methods, we show that genotype 1 is best split into three sub-genotypes instead of the previously proposed seven, and that these sub-genotypes are geographically restricted. The South Sudanese sequences confidently cluster within sub-genotype 1e, endemic to northeast, central, and east Africa. Bayesian Inference of phylogeny incorporating sampling dates shows that this new outbreak is not directly descended from other recent local outbreaks for which sequence data is available. However, the analysis suggests that sub-genotype 1e has been consistently and cryptically circulating locally for at least the past half century and that the known outbreaks are often not directly descended from one another. The ongoing presence of HEV, combined with poor sanitation and hygiene in the conflict-affected areas in the region, place vulnerable populations at risk for infection and its more serious effects, including progression to fulminant hepatitis.

Children with chronic illnesses report being bullied by peers, yet little is known about bullying among children with heart conditions. Using 2018-2020 National Survey of Children's Health data, the prevalence and frequency of being bullied in the past year (never; annually or monthly; weekly or daily) were compared between children aged 6-17 years with and without heart conditions. Among children with heart conditions, associations between demographic and health characteristics and being bullied, and prevalence of diagnosed anxiety or depression by bullying status were examined. Differences were assessed with chi-square tests and multivariable logistic regression using predicted marginals to produce adjusted prevalence ratios and 95% confidence intervals. Weights yielded national estimates. Of 69,428 children, 2.2% had heart conditions. Children with heart conditions, compared to those without, were more likely to be bullied (56.3% and 43.3% respectively; adjusted prevalence ratio [95% confidence interval] = 1.3 [1.2, 1.4]) and bullied more frequently (weekly or daily = 11.2% and 5.3%; p < 0.001). Among children with heart conditions, characteristics associated with greater odds of weekly or daily bullying included ages 9-11 years compared to 15-17 years (3.4 [2.0, 5.7]), other genetic or inherited condition (1.7 [1.0, 3.0]), ever overweight (1.7 [1.0, 2.8]), and a functional limitation (4.8 [2.7, 8.5]). Children with heart conditions who were bullied, compared to never, more commonly had anxiety (40.1%, 25.9%, and 12.8%, respectively) and depression (18.0%, 9.3%, and 4.7%; p < 0.01 for both). Findings highlight the social and psychological needs of children with heart conditions.

INTRODUCTION: International Classification of Diseases (ICD) codes recorded in administrative data are often used to identify congenital heart defects (CHD). However, these codes may inaccurately identify true positive (TP) CHD individuals. CHD surveillance could be strengthened by accurate CHD identification in administrative records using machine learning (ML) algorithms. METHODS: To identify features relevant to accurate CHD identification, traditional ML models were applied to a validated dataset of 779 patients; encounter level data, including ICD-9-CM and CPT codes, from 2011 to 2013 at four US sites were utilized. Five-fold cross-validation determined overlapping important features that best predicted TP CHD individuals. Median values and 95% confidence intervals (CIs) of area under the receiver operating curve, positive predictive value (PPV), negative predictive value, sensitivity, specificity, and F1-score were compared across four ML models: Logistic Regression, Gaussian Naive Bayes, Random Forest, and eXtreme Gradient Boosting (XGBoost). RESULTS: Baseline PPV was 76.5% from expert clinician validation of ICD-9-CM CHD-related codes. Feature selection for ML decreased 7138 features to 10 that best predicted TP CHD cases. During training and testing, XGBoost performed the best in median accuracy (F1-score) and PPV, 0.84 (95% CI: 0.76, 0.91) and 0.94 (95% CI: 0.91, 0.96), respectively. When applied to the entire dataset, XGBoost revealed a median PPV of 0.94 (95% CI: 0.94, 0.95). CONCLUSIONS: Applying ML algorithms improved the accuracy of identifying TP CHD cases in comparison to ICD codes alone. Use of this technique to identify CHD cases would improve generalizability of results obtained from large datasets to the CHD patient population, enhancing public health surveillance efforts.

BACKGROUND: Research on the association between neighborhood social deprivation and health among adults with congenital heart defects (CHD) is sparse. METHODS: We evaluated the associations between neighborhood social deprivation and health care utilization, disability, and comorbidities using the population-based 2016-2019 Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG) of young adults. Participants were identified from active birth defect surveillance systems in three U.S. sites and born with CHD between 1980 and 1997. We linked census tract-level 2017 American Community Survey information on median household income, percent of ≥25-year-old with greater than a high school degree, percent of ≥16-year-olds who are unemployed, and percent of families with children <18 years old living in poverty to survey data and used these variables to calculate a summary neighborhood social deprivation z-score, divided into tertiles. Adjusted prevalence ratios (aPR) and 95% confidence intervals (CI) derived from a log-linear regression model with a Poisson distribution estimated the association between tertile of neighborhood social deprivation and healthcare utilization in previous year (no encounters, 1 and ≥2 emergency room [ER] visits, and hospital admission), ≥1 disability, and ≥1 comorbidities. We accounted for age, place of birth, sex at birth, presence of chromosomal anomalies, and CHD severity in all models, and, additionally educational attainment and work status in all models except disability. RESULTS: Of the 1435 adults with CHD, 43.8% were 19-24 years old, 54.4% were female, 69.8% were non-Hispanic White, and 33.7% had a severe CHD. Compared to the least deprived tertile, respondents in the most deprived tertile were more likely to have no healthcare visit (aPR: 1.5 [95% CI: 1.1, 2.1]), ≥2 ER visits (1.6 [1.1, 2.3]), or hospitalization (1.6 [1.1, 2.3]) in the previous 12 months, a disability (1.2 [1.0, 1.5]), and ≥1 cardiac comorbidities (1.8 [1.2, 2.7]). CONCLUSIONS: Neighborhood social deprivation may be a useful metric to identify patients needing additional resources and referrals.

Background Administrative data permit analysis of large cohorts but rely on International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM), and International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) codes that may not reflect true congenital heart defects (CHDs). Methods and Results CHDs in 1497 cases with at least 1 encounter between January 1, 2010 and December 31, 2019 in 2 health care systems, identified by at least 1 of 87 ICD-9-CM/ICD-10-CM CHD codes were validated through medical record review for the presence of CHD and CHD native anatomy. Interobserver and intraobserver reliability averaged >95%. Positive predictive value (PPV) of ICD-9-CM/ICD-10-CM codes for CHD was 68.1% (1020/1497) overall, 94.6% (123/130) for cases identified in both health care systems, 95.8% (249/260) for severe codes, 52.6% (370/703) for shunt codes, 75.9% (243/320) for valve codes, 73.5% (119/162) for shunt and valve codes, and 75.0% (39/52) for "other CHD" (7 ICD-9-CM/ICD-10-CM codes). PPV for cases with >1 unique CHD code was 85.4% (503/589) versus 56.3% (498/884) for 1 CHD code. Of cases with secundum atrial septal defect ICD-9-CM/ICD-10-CM codes 745.5/Q21.1 in isolation, PPV was 30.9% (123/398). Patent foramen ovale was present in 66.2% (316/477) of false positives. True positives had younger mean age at first encounter with a CHD code than false positives (22.4 versus 26.3 years; P=0.0017). Conclusions CHD ICD-9-CM/ICD-10-CM codes have modest PPV and may not represent true CHD cases. PPV was improved by selecting certain features, but most true cases did not have these characteristics. The development of algorithms to improve accuracy may improve accuracy of electronic health records for CHD surveillance.

Background: Administrative data permits analysis of large cohorts but relies on International Classification of Diseases, Ninth and Tenth Revision, Clinical Modification (ICD) codes that may not reflect true congenital heart defects (CHD). Method(s): 1497 cases with at least one encounter between 1/1/2010 - 12/31/2019 in two healthcare systems (one adult, one pediatric) identified by at least one of 87 ICD CHD codes were validated through chart review for the presence of CHD and CHD anatomic group. Result(s): Inter- and intra-observer reliability averaged > 95%. Positive predictive value (PPV) of ICD codes for CHD was 68.1% (1020/1497) overall, 94.6% (123/130) for cases identified in both healthcare systems, 95.8% (249/260) for severe codes, 52.6% (370/703) for shunt codes, 75.9% (243/320) for valve codes, 73.5% (119/162) for shunt and valve codes, and 75.0% (39/52) for "Other CHD" (7 ICD codes). PPV for cases with >1 unique CHD code was 85.4% (503/589) vs. 56.3% (498/884) for one CHD code. Of cases with secundum atrial septal defect ICD codes 745.5/Q21.1 in isolation, 30.9% (123/398) had a confirmed CHD. Patent foramen ovale was present in 66.2% (316/477) of false positives (FP). The median number of unique CHD-coded encounters was higher for true positives (TP) than FP (2.0; interquartile range [IQR]: 1.0-3.0 vs 1.0; IQR:1.0-1.0, respectively, p<0.0001). TP had younger mean age at first encounter with a CHD code than FP (22.4 years vs 26.3 years, p=0.0017). Conclusion(s): PPV of CHD ICD codes varies by characteristics for detection of CHD by ICD code and anatomic grouping. While an ICD code for severe CHD and/or the presence of a case in more than one data source, regardless of anatomic group, is associated with higher PPV for CHD, most TP cases did not have these characteristics. The development of algorithms to improve accuracy may improve administrative data for CHD surveillance. Copyright The copyright holder for this preprint is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. This article is a US Government work. It is not subject to copyright under 17 USC 105 and is also made available for use under a CC0 license.

The emergence and spread of SARS-CoV-2 lineage B.1.1.7, first detected in the United Kingdom, has become a global public health concern because of its increased transmissibility. Over 2500 COVID-19 cases associated with this variant have been detected in the US since December 2020, but the extent of establishment is relatively unknown. Using travel, genomic, and diagnostic data, we highlight the primary ports of entry for B.1.1.7 in the US and locations of possible underreporting of B.1.1.7 cases. Furthermore, we found evidence for many independent B.1.1.7 establishments starting in early December 2020, followed by interstate spread by the end of the month. Finally, we project that B.1.1.7 will be the dominant lineage in many states by mid to late March. Thus, genomic surveillance for B.1.1.7 and other variants urgently needs to be enhanced to better inform the public health response.

Cognitive disability is the most prevalent disability type among young adults with congenital heart defects (CHD), reported by more than a quarter of young adults with CHD in CH STRONG (Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG).1 However, the long-term outcomes of adults with CHD and cognitive disabilities are not well understood. Therefore, we compared the socioeconomic and healthcare outcomes among adults (aged 19 to 38 years) with CHD with and without cognitive disabilities in CH STRONG and described the socioeconomic characteristics associated with the receipt of disability benefits among adults with CHD and cognitive disabilities.

BACKGROUND: Limited population-based information is available on long-term survival of US individuals with congenital heart defects (CHDs). Therefore, we assessed patterns in survival from birth until young adulthood (ie, 35 years of age) and associated factors among a population-based sample of US individuals with CHDs. METHODS: Individuals born between 1980 and 1997 with CHDs identified in 3 US birth defect surveillance systems were linked to death records through 2015 to identify those deceased and the year of their death. Kaplan-Meier survival curves, adjusted risk ratios (aRRs) for infant mortality (ie, death during the first year of life), and Cox proportional hazard ratios for survival after the first year of life (aHRs) were used to estimate the probability of survival and associated factors. Standardized mortality ratios compared infant mortality, >1-year mortality, >10-year mortality, and >20-year mortality among individuals with CHDs with general population estimates. RESULTS: Among 11 695 individuals with CHDs, the probability of survival to 35 years of age was 81.4% overall, 86.5% among those without co-occurring noncardiac anomalies, and 92.8% among those who survived the first year of life. Characteristics associated with both infant mortality and reduced survival after the first year of life, respectively, included severe CHDs (aRR=4.08; aHR=3.18), genetic syndromes (aRR=1.83; aHR=3.06) or other noncardiac anomalies (aRR=1.54; aHR=2.53), low birth weight (aRR=1.70; aHR=1.29), and Hispanic (aRR=1.27; aHR=1.42) or non-Hispanic Black (aRR=1.43; aHR=1.80) maternal race and ethnicity. Individuals with CHDs had higher infant mortality (standardized mortality ratio=10.17), >1-year mortality (standardized mortality ratio=3.29), and >10-year and >20-year mortality (both standardized mortality ratios ≈1.5) than the general population; however, after excluding those with noncardiac anomalies, >1-year mortality for those with nonsevere CHDs and >10-year and >20-year mortality for those with any CHD were similar to the general population. CONCLUSIONS: Eight in 10 individuals with CHDs born between1980 and 1997 survived to 35 years of age, with disparities by CHD severity, noncardiac anomalies, birth weight, and maternal race and ethnicity. Among individuals without noncardiac anomalies, those with nonsevere CHDs experienced mortality between 1 and 35 years of age, similar to the general population, and those with any CHD experienced mortality between 10 and 35 years of age, similar to the general population.

INTRODUCTION: The United States Centers for Disease Control and Prevention currently recommends HIV screening at least annually among sexually active gay, bisexual and other men who have sex with men (MSM), but only half report being tested in the past year in the United States. As HIV self-test kits are becoming more available around the United States via web and app-based interventions, it is important to understand who is willing and able to order them. This analysis sought to better understand predictors of free HIV self-test kit utilization among MSM in M-cubed, an HIV prevention mobile app intervention trial in Atlanta, Detroit and New York City. METHODS: We conducted an exploratory secondary analysis of self-report and in-app data collected from the intervention arm of the M-Cubed study from 24 January 2018 to 31 October 2019. Behavioural, demographic and other potential predictors of HIV self-test ordering were identified from Social Cognitive Theoretical underpinnings of the app, and from the literature. Significant predictor variables in bivariate analyses were considered for inclusion in the empiric multivariable model. Demographic variables chosen a priori were then added to a final model estimating adjusted prevalence ratios (aPR). RESULTS: Over half of the 417 intervention participants ordered an HIV self-test kit during the study. In bivariate analyses, ordering a kit was associated with HIV testing history, plans to get tested and reported likelihood of getting tested. In the final model, participants were more likely to order a kit if they reported plans to get tested in the next 3 months (aPR = 1.58, 95% CI: 1.18-2.11) or had not tested for HIV in the past 3 months (aPR = 1.38, 95% CI: 1.13-1.70). There was no difference in HIV self-test kit ordering by income, race/ethnicity or age. CONCLUSIONS: HIV testing is an important tool in ending the HIV epidemic and must be accessible and frequent for key populations. This study demonstrates the effectiveness of HIV self-test kits in reaching populations with suboptimal testing rates and shows that self-testing may supplement community-based and clinical testing while helping overcome some of the structural barriers that limit access to annual HIV prevention services for MSM.

Background: Women with disabilities are less likely to receive reproductive health counseling than women without disabilities. Yet, little is known about reproductive health counseling and concerns among women with congenital heart defects (CHD) and disabilities. Methods: We used population-based survey data from 778 women aged 19 to 38 years with CHD to examine contraceptive and pregnancy counseling and pregnancy concerns and experiences by disability status, based on six validated questions on vision, hearing, mobility, cognition, self-care, and living independently. Multivariable Poisson regression was used to examine adjusted prevalence ratios between disability status and each outcome, adjusted for CHD severity, age, race/ethnicity, place of birth (Arkansas, Arizona, Georgia), and insurance type. Results: Women with disabilities (n = 323) were 1.4 and 2.3 times more likely than women without disabilities (n = 455) to receive clinician counseling on safe contraceptive methods and avoiding pregnancy because of their CHD. Women with CHD and disabilities, compared to those without disabilities, were more likely to be concerned about their ability to have children (aPR = 1.2) and to have delayed or avoided pregnancy (aPR = 2.2); they were less likely to have ever been pregnant (aPR = 0.7). Associations differed slightly across specific disability types. All associations remained after excluding 71 women with chromosomal anomalies. Conclusion: Among women with CHD, reproductive counseling, concerns, and experiences differ by disability status.

Many of the estimated 1.4 million adults with congenital heart defects (CHDs) in the United States are lost to follow-up (LTF) despite recommendations for ongoing cardiology care. Using 2016 to 2019 CH STRONG (Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG) data, we describe cardiac care among community-based adults with CHD, born in 1980 to 1997, identified through state birth defects registries. Our estimates of LTF were standardized to the CH STRONG eligible population and likely more generalizable to adults with CHD than clinic-based data. Half of our sample were LTF and more than 45% had not received cardiology care in over 5 years. Of those who received care, only 1 in 3 saw an adult CHD physician at their last encounter. Not knowing they needed to see a cardiologist, being told they no longer needed cardiology care, and feeling "well" were the top reasons for LTF, and only half of respondents report doctors discussing the need for cardiac follow-up.

Among children with and without heart conditions of different race/ethnicities, upstream social determinants of health, such as socio-economic status, access to care, and healthcare utilisation, may vary. Using caregiver-reported data from the 2016-19 National Survey of Children's Health, we calculated the prevalence of caregiver employment and education, child's health insurance, usual place of medical care in the past 12 months, problems paying for child's care, ≥2 emergency room visits, and unmet healthcare needs by heart condition status and race/ethnicity (Hispanic, non-Hispanic Black, and non-Hispanic White). For each outcome, we used multivariable logistic regression to generate adjusted prevalence ratios controlling for child's age and sex. Of 2632 children with heart conditions and 104,841 without, 65.4% and 58.0% were non-Hispanic White and 52.0% and 51.1% were male, respectively. Children with heart conditions, compared to those without, were 1.7-2.6 times more likely to have problems paying for healthcare, have ≥2 emergency room visits, and have unmet healthcare needs. Hispanic and non-Hispanic Black children with heart conditions, compared to non-Hispanic White, were 1.5-3.2 times as likely to have caregivers employed <50 weeks in the past year and caregivers with ≤ high school education, public or no health insurance, no usual place of care, and ≥2 emergency room visits. Children with heart conditions, compared to those without, may have greater healthcare needs that more commonly go unmet. Among children with heart conditions, Hispanic and non-Hispanic Black children may experience lower socio-economic status and greater barriers to healthcare than non-Hispanic White children.

BACKGROUND: Gay, bisexual, and other men who have sex with men (GBMSM) continue to be overrepresented in human immunodeficiency virus (HIV) infection in the United States. HIV prevention and care interventions that are tailored to an individual's serostatus have the potential to lower the rate of new infections among GBMSM. Mobile technology is a critical tool for disseminating targeted messaging and increasing uptake of basic prevention services including HIV testing, sexually transmitted infection (STI) testing, and pre-exposure prophylaxis (PrEP). Mobile Messaging for Men (M-Cubed) is a mobile health HIV prevention intervention designed to deliver video- and text-based prevention messages, provide STI and HIV information, and link GBMSM to prevention and healthcare resources. The current report describes an iterative process of identifying and selecting publicly available videos to be used as part of the M-Cubed intervention. We also conducted interviews with GBMSM to assess the acceptability, comprehension, and potential audience reach of the selected video messages. METHODS: The selection of videos included balancing of specific criteria [e.g., accuracy of scientific information, video length, prevention domains: HIV/STI testing, antiretroviral therapy (ART), PrEP, engagement in care, and condom use] to ensure that they were intended for our GBMSM audiences: HIV-negative men who engage in condomless anal sex, HIV-negative men who do not engage in condomless anal sex, and men living with HIV. This formative study included in-person interviews with 26 GBMSM from three U.S. cities heavily impacted by the HIV epidemic-New York City, Detroit, and Atlanta. RESULTS: Following a qualitative content analysis, the study team identified five themes across the interviews: participant reactions to the video messages, message comprehension, PrEP concerns, targeting of video messaging, and prompted action. CONCLUSIONS: Study results informed a final selection of 12 video messages for inclusion in a randomized controlled trial of M-Cubed. Findings may serve as a guide for researchers who plan to develop HIV prevention interventions that utilize publicly available videos to promote behavioral change. Further, the findings presented here suggest the importance of developing videos with broad age and gender diversity for use in interventions such as M-Cubed, and in other health promotion settings.

This report provides an overview of the unique reproductive health issues facing women with congenital heart defects (CHDs) and of the clinical care and professional guidelines on contraception, preconception care, and pregnancy for this population. It describes Centers for Disease Control and Prevention (CDC) activities related to surveillance of reproductive health issues among females with CHDs. It also describes CDC's work bringing awareness to physicians who provide care to adolescents and women with CHDs, including obstetrician/gynecologists, about the need for lifelong cardiology care for their patients with CHDs.

The etiology of Nodding Syndrome remains unclear, and comprehensive genotyping and phenotyping data from patients remain sparse. Our objectives were to characterize the phenotype of patients with Nodding Syndrome, investigate potential contributors to disease etiology, and evaluate response to immunotherapy. This cohort study investigated members of a single-family unit from Lamwo District, Uganda. The participants for this study were selected by the Ugandan Ministry of Health as representative for Nodding Syndrome and with a conducive family structure for genomic analyses. Of the eight family members who participated in the study at the National Institutes of Health (NIH) Clinical Center, three had Nodding Syndrome. The three affected patients were extensively evaluated with metagenomic sequencing for infectious pathogens, exome sequencing, spinal fluid immune analyses, neurometabolic and toxicology testing, continuous electroencephalography, and neuroimaging. Five unaffected family members underwent a subset of testing for comparison. A distinctive interictal pattern of sleep-activated bursts of generalized and multifocal epileptiform discharges and slowing was observed in two patients. Brain imaging showed two patients had mild generalized cerebral atrophy, and both patients and unaffected family members had excessive metal deposition in the basal ganglia. Trace metal biochemical evaluation was normal. Cerebrospinal fluid (CSF) was non-inflammatory, and one patient had CSF-restricted oligoclonal bands. Onchocerca volvulus specific antibodies were present in all patients and skin snips were negative for active onchocerciasis. Metagenomic sequencing of serum and CSF revealed hepatitis B virus in the serum of one patient. Vitamin B6 metabolites were borderline low in all family members, and CSF pyridoxine metabolites were normal. Mitochondrial DNA testing was normal. Exome sequencing did not identify potentially causal candidate gene variants. Nodding Syndrome is characterized by a distinctive pattern of sleep-activated epileptiform activity. The associated growth stunting may be due to hypothalamic dysfunction. Extensive testing years after disease onset did not clarify a causal etiology. A trial of immunomodulation (plasmapheresis in two patients and intravenous immunoglobulin in one patient) was given without short-term effect, but longer-term follow-up was not possible to fully assess any benefit of this intervention.

Uganda is highly vulnerable to public health emergencies (PHEs) due to its geographic location next to the Congo Basin epidemic hot spot, placement within multiple epidemic belts, high population growth rates, and refugee influx. In view of this, Uganda's Ministry of Health established the Public Health Emergency Operations Center (PHEOC) in September 2013, as a central coordination unit for all PHEs in the country. Uganda followed the World Health Organization's framework to establish the PHEOC, including establishing a steering committee, acquiring legal authority, developing emergency response plans, and developing a concept of operations. The same framework governs the PHEOC's daily activities. Between January 2014 and December 2021, Uganda's PHEOC coordinated response to 271 PHEs, hosted 207 emergency coordination meetings, trained all core staff in public health emergency management principles, participated in 21 simulation exercises, coordinated Uganda's Global Health Security Agenda activities, established 6 subnational PHEOCs, and strengthened the capacity of 7 countries in public health emergency management. In this article, we discuss the following lessons learned: PHEOCs are key in PHE coordination and thus mitigate the associated adverse impacts; although the functions of a PHEOC may be legalized by the existence of a National Institute of Public Health, their establishment may precede formally securing the legal framework; staff may learn public health emergency management principles on the job; involvement of leaders and health partners is crucial to the success of a public health emergency management program; subnational PHEOCs are resourceful in mounting regional responses to PHEs; and service on the PHE Strategic Committee may be voluntary.

Adults with CHD were 2× as likely as those without CHD to have early-onset dementia. | | • | Early-onset dementia was associated with CHD among males but not females. | | • | Early-onset dementia was associated with CHD in both age groups (45–54 & 55–64 yrs). | | • | Results were similar comparing those with non-severe CHD to no CHD.

Given the increased risk for severe COVID-19 illness in individuals with cardiac disease, individuals with congenital heart defects (CHDs) might have increased risk of severe illness from COVID-19 as well.1 Most publications on CHD and COVID-19 illness have been restricted to patients at congenital cardiology centers, limiting generalizability, because many individuals with CHD do not receive specialized cardiology care.24 Furthermore, the studies did not include comparison groups without CHD or adjust for differences in established risk factors for critical COVID-19,4 and comparisons to general population estimates may be confounded. | | We compared the period prevalence of critical COVID-19 illness (intensive care unit [ICU] admission, invasive mechanical ventilation [IMV], or death) among hospitalized patients with COVID-19 with and without CHD. Among patients with CHD, we examined characteristics associated with critical COVID-19 illness.

OBJECTIVE: Our objective was to assess differences inpregnancy outcomes during the COVID-19 pandemic compared to the previous year. STUDY DESIGN: In a cross-sectional study of delivery hospitalizations in the Premier Healthcare Database Special COVID-19 Release, we assessed differences in selected maternal and pregnancy outcomes occurring April-December in 2019 and 2020 in the United States. RESULT: Among 663,620 deliveries occurring in 2019 and 614,093 deliveries occurring in 2020, we observed an increase in in-hospital maternal death from 2019 to 2020, which was no longer statistically significant after excluding deliveries with a COVID-19 diagnosis. Intensive care unit admission and preterm birth decreased from 2019 to 2020. There was no difference in the prevalence of most other outcomes examined. CONCLUSION: The full impact of the COVID-19 pandemic on maternal and pregnancy outcomes remains to be understood. Most outcomes investigated experienced minimal change from 2019 to 2020.

Approximately 900,000 U.S. children have heart conditions, such as congenital heart disease (1). These children might be at increased risk for life-threatening infective endocarditis from oral bacteria in the bloodstream (2). Therefore, preventive dental care (i.e., check-ups, dental cleaning, radiographs, fluoride treatment, or sealant) to maintain oral health is important. Oral health status and receipt of preventive dental care were compared between children with heart conditions (2,928) and without (116,826) using population-based 2016-2019 National Survey of Children's Health (NSCH) data. Approximately 83% of children with and 80% without heart conditions received preventive dental care in the past year (p = 0.06). Children with heart conditions were more likely than were those without to have poor oral health (17.2% versus 13.7%; p = 0.02) and teeth in fair or poor condition (9.9% versus 5.3%; p<0.01). Among those with a heart condition, having low household income; an intellectual or developmental disability; and no well-child visit or medical home were associated with poor oral health. Receipt of preventive dental care was higher among children aged ≥6 years and those with insurance. Public health practitioners and health care providers can implement strategies (e.g., parent and patient education and collaboration between pediatricians, dentists, and cardiologists) to improve oral health and care among children with heart conditions, especially those with fewer resources and intellectual or developmental disabilities.

BACKGROUND: Gay, bisexual, and other men who have sex with men (GBMSM) face the highest burden of HIV in the United States, and there is a paucity of efficacious mobile health (mHealth) HIV prevention and care interventions tailored specifically for GBMSM. We tested a mobile app combining prevention messages and access to core prevention services for GBMSM. OBJECTIVE: To measure the efficacy of the Mobile Messaging for Men (M-cubed) app and related service to increase HIV prevention and care behaviors in diverse US GBMSM. METHODS: We conducted a randomized open label study with a waitlist control group among GBMSM (in three groups: lower-risk HIV-negative, higher-risk HIV negative, and living with HIV) recruited online and in venues in Atlanta, Detroit and New York. Participants were randomly assigned to receive access to the app immediately or at 9 months after randomization. The app provided prevention messages in six domains of sexual health and offered ordering of at-home HIV and STI test kits, receiving PrEP evaluations and navigation, and service locators. Serostatus- and risk-specific prevention outcomes were evaluated at baseline, at the end of the intervention period, and at 3, 6 and 9 months after the intervention period. RESULTS: 1226 GBMSM were enrolled and randomized; 611 were assigned to and 608 were analyzed in the intervention group, and 615 were assigned to and 611 were analyzed in the control group. For higher-risk GBMSM, allocation to the intervention arm was associated with a higher odds of HIV testing during the intervention period (aOR 2.02, 95% CI 1.11-3.66) and with a higher odds of using PrEP in the 3 months after the intervention period (aOR 2.41, CI:1.00-5.76, p<0.05). No changes in HIV prevention or care were associated with allocation to the intervention arm for the lower-risk HIV-negative or living with HIV groups. CONCLUSIONS: Access to the M-cubed app was associated with increased HIV testing and PrEP use among higher-risk HIV-negative GBMSM in three US cities. The app could be made available through funded HIV prevention providers; additional efforts are needed to understand optimal strategies to implement the app outside of the research setting. CLINICALTRIAL: ClinicalTrials.gov, NCT03666247. INTERNATIONAL REGISTERED REPORT: RR2-10.2196/16439.

BACKGROUND: Due to invasive treatments and stressors related to heart health, adults with congenital heart defects (CHDs) may have an increased risk of post-traumatic stress disorder (PTSD), anxiety, and/or depressive disorders. Our objectives were to estimate the prevalence of these disorders among individuals with CHDs. METHODS: Using IBM® MarketScan® Databases, we identified adults age 18-49 years with ≥2 outpatient anxiety/depressive disorder claims on separate dates or ≥1 inpatient anxiety/depressive disorder claim in 2017. CHDs were defined as ≥2 outpatient CHD claims ≥30 days apart or ≥1 inpatient CHD claim documented in 2007-2017. We used log-binomial regression to estimate adjusted prevalence ratios (aPR) and 95% confidence intervals (CI) for associations between CHDs and anxiety/depressive disorders. RESULTS: Of 13,807 adults with CHDs, 12.4% were diagnosed with an anxiety or depressive disorder. Adults with CHDs, compared to the 5,408,094 without CHDs, had higher prevalence of PTSD (0.8% vs. 0.5%; aPR: 1.5 [CI: 1.2-1.8]), anxiety disorders (9.9% vs. 7.5%; aPR: 1.3 [CI: 1.3-1.4]), and depressive disorders (6.3% vs. 4.9%; aPR: 1.3 [CI: 1.2-1.4]). Among individuals with CHDs, female sex (aPR range: 1.6-3.3) and inpatient admission (aPR range 1.1-1.9) were associated with anxiety/depressive disorders. CONCLUSION: Over 1 in 8 adults with CHDs had diagnosed PTSD and/or other anxiety/depressive disorders, 30-50% higher than adults without CHDs. PTSD was rare, but three times more common in women with CHDs than men. Screening and referral for services for these conditions in people with CHDs may be beneficial.

During July-August 2021, a COVID-19 outbreak involving 21 residents (all fully vaccinated) and 10 staff (9 fully vaccinated) occurred in a Connecticut nursing home. The outbreak was likely initiated by a fully vaccinated staff member and propagated by fully vaccinated persons. Prior COVID-19 was protective among vaccinated residents.