Guidelines recommend children maintain a healthy body mass index (BMI) and do physical activity. No population-based estimates exist for elevated BMI or insufficient physical activity among children with congenital heart conditions (CHC). We estimated the national prevalence of elevated BMI and insufficient physical activity among children with and without CHC. We analyzed cross-sectional, nationally representative data on 57,080 children aged 6-17 years from the National Survey of Children's Health, 2021-2022. Among children with (N = 1135) and without (N = 55,945) CHC, we estimated prevalence and 95% confidence intervals (CI) for caregiver-reported elevated BMI (≥ 85th percentile for sex and age) and insufficient physical activity (< 60 min of physical activity < 7 days/week). Using multivariable Cox proportional hazards models adjusted for age, sex, ethnicity/race, federal poverty level, and caregiver education, we approximated adjusted prevalence ratios (aPR) and CI for each outcome by CHC status and, separately, by demographics among children with CHC. Children with CHC had a similar prevalence of elevated BMI (31.5%, aPR = 0.97, CI 0.82-1.14) and a slightly higher prevalence of insufficient physical activity (84.0%, aPR = 1.05, CI 1.00-1.09) compared to children without CHC. Among children with CHC, elevated BMI was 1.5-1.6 times higher for Hispanic compared to non-Hispanic White children, those with lower compared to higher household incomes, and those with caregivers with ≤ high school compared to ≥ college education; there were no demographic differences in insufficient physical activity. Pediatricians and cardiologists can support patients with CHC in meeting BMI and physical activity recommendations to improve their long-term cardiovascular outcomes.

Detecting and responding to clusters of rapid HIV transmission is a core HIV prevention strategy in the United States, guiding public health interventions and identifying gaps in prevention and care services. In 2016, the Centers for Disease Control and Prevention (CDC) initiated molecular cluster detection using data from 27 jurisdictions. During 2016-2023, CDC expanded sequence reporting nationwide and deployed Secure HIV-TRACE, an application supporting health department (HD) molecular cluster detection. CDC conducts molecular cluster detection quarterly; state and local HDs analyze local data monthly. HDs began routinely reporting clusters to CDC by using cluster report forms in 2020. During 2018-2023, CDC identified 404 molecular clusters of rapid HIV transmission; 325 (80%) involved multiple jurisdictions. During 2020-2023, HDs reported 298 molecular clusters to CDC; 249 were first detected by HDs. Expanding molecular cluster detection has provided a foundation for improving service delivery to networks experiencing rapid HIV transmission.

HIV cluster detection and response (CDR) provides a framework for identifying rapid HIV transmission and guiding implementation of proven HIV prevention and care strategies. Characterizing the relative benefits of CDR is important for guiding policy makers in resource allocation for HIV prevention. We sought to understand how many HIV infections would need to be averted by CDR activities to achieve various return-on-investment (ROI) thresholds. We conducted an ROI analysis of CDR in 2022, incorporating costs and benefits across US jurisdictions funded for HIV surveillance and prevention. Setting ROI thresholds between 1 and 5, we estimated the number of HIV infections that would need to be averted annually by CDR activities to reach ROI thresholds. A scenario was considered cost saving if the ROI > 1. Based on the number of people in national priority molecular clusters and estimated transmission in these clusters, we determined the percent reduction in transmission within these clusters that would be required to achieve the threshold number of HIV infections averted. The number of HIV infections needing to be averted annually ranged from 19 infections (ROI = 1) to 94 infections (ROI = 5). Among 657 HIV transmissions within national priority molecular clusters, the percent reduction in HIV transmission needed to meet ROI thresholds ranged from 2.9% (ROI = 1) to 14.3% (ROI = 5). In conclusion, CDR activities would need to avert a minimal number of HIV infections nationally to achieve cost savings.

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: Clusters of rapid HIV transmission indicate larger underlying networks that are not effectively reached by HIV prevention, testing, and care services. Starting in 2018, the Centers for Disease Control and Prevention (CDC) funded 59 U.S. health departments (HDs) to detect and respond to HIV clusters; HDs began reporting clusters to CDC in January 2020. METHODS: For clusters reported to CDC, we described cluster characteristics at detection, including detection method; size; HIV transmission category, defined as that of >50% of cluster members; and HD investigation and response activities. RESULTS: During 2020-2022, 45 HDs reported 322 HIV clusters, with most detected by molecular analysis of HIV sequences (75%). Most were detected in the South (46%) and three-quarters were predominant sexual transmission. Median cluster size at detection for molecular clusters was 10 persons (interquartile range 7-18). Among 205 clusters with follow-up data, investigation and response activities were conducted for 95%, including direct outreach to persons in clusters for partner services (64%), medical chart reviews (42%), and focused testing events (13%). Limited data on named partners tested showed that 11% received new HIV diagnoses. CONCLUSIONS: HD HIV cluster detection activities detected many clusters. Response activities were tailored for different clusters and intervened in networks with rapid transmission and high undiagnosed infection, as indicated by high positivity among partners. Cluster detection and response is an important tool to identify and address gaps in HIV prevention, testing, and care that facilitate rapid transmission.

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.

OBJECTIVE: To estimate the influence of bursts of rapid HIV transmission on future transmission and describe populations affected by transmission bursts. DESIGN: Phylogenetic analysis of US National HIV Surveillance System data. METHODS: Time-scaled phylogenetic trees were inferred for six geographic regions using sequences from persons with HIV (PWH) with diagnoses of HIV infection 2014-2019. Transmission bursts were defined as ≥3 adjacent inferred transmission events in the phylogeny during a detection period. We calculated the relative contribution of transmission bursts 2015-2016 to transmission 2017-2019 compared with non-bursts. Then, we detected bursts within any sliding 2-year period 2014-2019 and assessed descriptive associations of characteristics of individuals involved with or descended from transmission bursts using univariate risk ratios. RESULTS: The 5.6% of phylogenetic lineages involved in transmission bursts 2015-2016 contributed to 14.9% of inferred transmission events 2017-2019. The relative contribution of lineages involved in transmission bursts to future transmission was 2.94 times that of lineages not involved in bursts. Younger age at diagnosis, self-identification as transgender or an additional gender identity, or as a cisgender man, male-to-male sexual contact, injection drug use, or male-to-male sexual contact and injection drug use, and diagnosis during acute or early infection were most strongly associated with involvement in or descendance from transmission bursts. CONCLUSIONS: Transmission bursts contribute disproportionately to future HIV transmission, underscoring the value of detecting and responding to rapid transmission to reduce incidence. Bursts of rapid transmission may also contribute to enduring disparities in incidence among some key populations.

BACKGROUND: Critical congenital heart defects (CCHDs) are associated with considerable morbidity and mortality. This study estimated survival of children with nonsyndromic CCHDs and evaluated relationships between exposures of interest and survival by CCHD severity (univentricular or biventricular function). METHODS: This analysis included 4380 infants with CCHDs (cases) born during 1999-2011 and enrolled in the National Birth Defects Prevention Study, a multisite, population-based case-control study of major birth defects. Cases were linked to state death files. Nonparametric Kaplan-Meier survival functions were used to estimate 1- and 5-year survival probabilities overall and by severity group (univentricular/biventricular) stratified by demographic and clinical exposure variables of interest. The log-rank test was used to determine whether stratified survival curves were equivalent. Survival and 95% confidence intervals (CIs) were also estimated using Cox proportional hazards modeling adjusted for maternal age, education, race/ethnicity, study site, and birth year. RESULTS: One- and five-year survival rates were 85.8% (CI 84.7-86.8) and 83.7% (CI 82.5-84.9), respectively. Univentricular 5-year survival was lower than biventricular case survival [65.3% (CI 61.7-68.5) vs. 89.0% (CI 87.8-90.1; p < 0.001)]. Clinical factors (e.g. preterm birth, low birthweight, and complex/multiple defects) were associated with lower survival in each severity group. Sociodemographic factors (non-Hispanic Black race/ethnicity, <high school education, smoking, and lower household income) were only associated with survival among biventricular cases. CONCLUSIONS: Mortality among children with CCHDs occurred primarily in the first year of life. Survival was lower for those with univentricular defects, and social determinants of health were most important in predicting survival for those with biventricular defects.

HIV infection is monitored through the National HIV Surveillance System (NHSS) to help improve the health of people with HIV and reduce transmission. NHSS data are routinely used at federal, state, and local levels to monitor the distribution and transmission of HIV, plan and evaluate prevention and care programs, allocate resources, inform policy development, and identify and respond to rapid transmission in the United States. We describe the expanded use of HIV surveillance data since the 2013 NHSS status update, during which time the Centers for Disease Control and Prevention (CDC) coordinated to revise the HIV surveillance case definition to support the detection of early infection and reporting of laboratory data, expanded data collection to include information on sexual orientation and gender identity, enhanced data deduplication processes to improve quality, and expanded reporting to include social determinants of health and health equity measures. CDC maximized the effects of federal funding by integrating funding for HIV prevention and surveillance into a single program; the integration of program funding has expanded the use of HIV surveillance data and strengthened surveillance, resulting in enhanced cluster response capacity and intensified data-to-care activities to ensure sustained viral suppression. NHSS data serve as the primary source for monitoring HIV trends and progress toward achieving national initiatives, including the US Department of Health and Human Services' Ending the HIV Epidemic in the United States initiative, the White House's National HIV/AIDS Strategy (2022-2025), and Healthy People 2030. The NHSS will continue to modernize, adapt, and broaden its scope as the need for high-quality HIV surveillance data remains.

The U.S. COVID-19 vaccination program, which commenced in December 2020, has been instrumental in preventing morbidity and mortality from COVID-19 disease. Safety monitoring has been an essential component of the program. The federal government undertook a comprehensive and coordinated approach to implement complementary safety monitoring systems and to communicate findings in a timely and transparent way to healthcare providers, policymakers, and the public. Monitoring involved both well-established and newly developed systems that relied on both spontaneous (passive) and active surveillance methods. Clinical consultation for individual cases of adverse events following vaccination was performed, and monitoring of special populations, such as pregnant persons, was conducted. This report describes the U.S. government's COVID-19 vaccine safety monitoring systems and programs used by the Centers for Disease Control and Prevention, the U.S. Food and Drug Administration, the Department of Defense, the Department of Veterans Affairs, and the Indian Health Service. Using the adverse event of myocarditis following mRNA COVID-19 vaccination as a model, we demonstrate how the multiple, complementary monitoring systems worked to rapidly detect, assess, and verify a vaccine safety signal. In addition, longer-term follow-up was conducted to evaluate the recovery status of myocarditis cases following vaccination. Finally, the process for timely and transparent communication and dissemination of COVID-19 vaccine safety data is described, highlighting the responsiveness and robustness of the U.S. vaccine safety monitoring infrastructure during the national COVID-19 vaccination program.

BACKGROUND: Clinical management of multisystem inflammatory syndrome in children (MIS-C) has varied over time and by medical institution. METHODS: Data on patients with MIS-C were collected from 4 children's hospitals between March 16, 2020 and March 10, 2021. Relationships between MIS-C treatments and patient demographics, clinical characteristics, and outcomes were described. Propensity score matching was utilized to assess the relative risk of outcomes dependent on early treatment with intravenous immunoglobulin (IVIG) or low-dose steroids, controlling for potential confounding variables. RESULTS: Of 233 patients diagnosed with MIS-C, the most commonly administered treatments were steroids (88.4%), aspirin (81.1%), IVIG (77.7%) and anticoagulants (71.2%). Compared with those patients without respiratory features, patients with respiratory features were less likely to receive IVIG and steroids on the same day (combination treatment) (44.1%). Controlling for confounding variables, patients receiving IVIG within 1 day of hospitalization were less likely to have hospital length of stay ≥8 days (RR = 0.53, 95% CI: 0.31-0.88). Patients receiving low-dose steroids within 1 day of hospitalization were less likely to develop ventricular dysfunction (RR = 0.45, 95% CI: 0.26-0.77), have increasingly elevated troponin levels (RR = 0.55, 95% CI: 0.40-0.75) or have hospital length of stay ≥8 days (RR = 0.46, 95% CI: 0.29-0.74). CONCLUSION: Treatments for MIS-C differed by hospital, patient characteristics and illness severity. When IVIG and low-dose steroids were administered in combination or low-dose steroids were administered alone within 1 day of hospitalization, the risk of subsequent severe outcomes was decreased.

BACKGROUND: The long-term effects of children hospitalized with multisystem inflammatory syndrome in children (MIS-C) or acute COVID-19 are not well known. Our objective was to determine long-term outcomes. METHODS: Children hospitalized with MIS-C or COVID-19 at 3 US hospitals from March 2020, through February 2021 were followed to assess health through 2 years post-hospitalization using medical records and patient surveys. RESULTS: Medical record abstraction was performed for 183 patients hospitalized with MIS-C, 53 of whom participated in surveys, and 97 patients hospitalized with COVID-19, 35 of whom participated in surveys. Patients with MIS-C were younger (median, 9 vs. 14 years of age for COVID-19 patients; P = 0.004), more frequently male (62% vs. 39%; P < 0.001) and had more cardiac (14% vs. 2%; P = 0.001) and neurologic sequelae (8% vs. 1%; P = 0.023). Children with COVID-19 more often had other comorbidities (59% vs. 19%; P < 0.001). Full mental recovery at the time of survey 2 (median, 16 months post-hospitalization for patients with MIS-C and 20 months for patients with COVID-19) was 85% and 88%, respectively; full physical recovery was 87% and 81%, respectively; and nearly all had resumption of normal activities. Patients with MIS-C reported more frequent headache at 1 month (45% vs. 20%; P = 0.037). Patients with COVID-19 were more likely to report cough at 1 month (37% vs. 17%; P = 0.045). Fatigue persisted >1 year in 15%-20% of patients in both groups. CONCLUSIONS: Approximately 20% of children with MIS-C and COVID-19 continued to have symptoms including fatigue and headache >1 year after hospital discharge. The duration of these findings emphasizes the importance of providers following patients until sequelae have resolved.

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: Multisystem inflammatory syndrome in children (MIS-C) is a hyperinflammatory condition associated with antecedent SARS-CoV-2 infection. In the United States, reporting of MIS-C after vaccination is required under COVID-19 vaccine emergency use authorizations. This case series describes persons aged 12-20 years with MIS-C following COVID-19 vaccination reported to passive surveillance systems or through clinician outreach to CDC. Method(s): We investigated potential cases of MIS-C after COVID-19 vaccination reported to CDC's health department-based national MIS-C surveillance, the Vaccine Adverse Event Reporting System (VAERS, co-administered by CDC and the U.S. FDA), and CDC's Clinical Immunization Safety Assessment Project (CISA) from December 14, 2020, to August 31, 2021. We describe cases meeting the CDC MIS-C case definition. Any positive SARS-CoV-2 serology test satisfied the case criteria although anti-nucleocapsid antibody indicates SARS-CoV-2 infection, while anti-spike protein antibody indicates either infection or COVID-19 vaccination. Finding(s): We identified 21 persons with MIS-C after COVID-19 vaccination. Of these 21 persons, median age was 16 years (range, 12-20 years); 13 (62%) were male. All were hospitalized; 12 (57%) had intensive care unit admission, and all were discharged home. Fifteen (71%) of the 21 had laboratory evidence of past or recent SARS-CoV-2 infection, and six (29%) did not. Through August 2021, 21,335,331 persons aged 12-20 years had received >=1 dose of COVID-19 vaccine, making the overall reporting rate for MIS-C following vaccination 1.0 case per million persons receiving >=1 vaccine dose in this age group. The reporting rate for those without evidence of SARS-CoV-2 infection was 0.3 cases per million vaccinated persons. Interpretation(s): In our case series, we describe a small number of persons with MIS-C who had received >=1 COVID-19 vaccine dose before illness onset. Continued reporting of potential cases and surveillance for MIS-C illnesses after COVID-19 vaccination is warranted. Copyright The copyright holder for this preprint is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. All rights reserved. No reuse allowed without permission.

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.

OBJECTIVE: To evaluate the hypothesis that childhood survival for individuals with Down syndrome (DS) and congenital heart defects (CHDs) has improved in recent years, approaching survival of those with DS without CHDs. STUDY DESIGN: Individuals with DS born 1979-2018 were identified through the Metropolitan Atlanta Congenital Defects Program, a population-based birth defects surveillance system administered by the Centers for Disease Control and Prevention. Survival analysis was performed to evaluate predictors of mortality for those with DS. RESULTS: The cohort included 1,671 individuals with DS; 764 had associated CHDs. Five-year survival in those with DS with CHD improved steadily among individuals born in the 1980s through the 2010s (85% to 93%, p=0.01) but remained stable (96% to 95%, p=0.97) in those with DS without CHDs. The presence of a CHD was not associated with mortality through 5 years of age for those born 2010 or later (hazard ratio 2.63 [95% confidence interval 0.95 - 8.37]). In multivariable analyses, atrioventricular septal defects were associated with early (<1 year) and late (>5 year) mortality, while ventricular septal defects were associated with intermediate (1-5 years) mortality and atrial septal defects with late mortality, when adjusting for other risk factors. CONCLUSIONS: The gap in five-year survival between children with DS with and without CHDs has improved over the last four decades. Survival after 5 years remains lower for those with CHDs, although longer follow-up will be needed to determine if this difference lessens for those born in the more recent years.

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.

In Reply We welcome the opportunity to discuss the interpretation of safety monitoring data regarding COVID-19 mRNA vaccine–associated myocarditis in the US. | | VAERS, which accepts reports of adverse events from clinicians, vaccine manufacturers, and the general public, is used by the Centers for Disease Control and Prevention (CDC) and the US Food and Drug Administration (FDA) to investigate adverse events nationally. The large population of vaccinated persons in the US permits early detection of safety signals and estimation of adverse event reporting rates when data on vaccine doses administered are available, as is the case for COVID-19 vaccines. Thus, in our recent study1 we were able to report overall and stratified reporting rates, but not incidence rates. That is, we presented numbers of myocarditis cases reported to VAERS divided by vaccine doses administered. Clinicians are required to report serious adverse events, including hospitalizations. If all new cases are reported, then reporting rates can approximate incidence rates. Furthermore, if a reporting rate exceeds expected background incidence, it is reasonable to conclude that there is an increased risk, particularly if a reporting rate is substantially higher than a background rate. However, as Dr Weiss correctly points out, VAERS is a passive surveillance system dependent on spontaneous reporting, with both overreporting and underreporting possible. To minimize possible overreporting bias, CDC scientists reviewed available medical records and attempted to interview treating physicians for each potential case. Furthermore, given that our reporting rates were similar to incidence rates for vaccine-associated myocarditis reported in Israeli studies, it is unlikely that there was substantial underreporting.2,3 Some of the differences in rates from our study compared with Israeli studies might be explained by differing demographics or our use of a 7-day postvaccination period to detect cases vs a 21-day period used in the Israeli studies.

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.

During February 2021-June 2022, the Georgia Department of Public Health (GDPH) detected five clusters of rapid HIV transmission concentrated among Hispanic or Latino (Hispanic) gay, bisexual, and other men who have sex with men (MSM) in metropolitan Atlanta. The clusters were detected through routine analysis of HIV-1 nucleotide sequence data obtained through public health surveillance (1,2). Beginning in spring 2021, GDPH partnered with health districts with jurisdiction in four metropolitan Atlanta counties (Cobb, DeKalb, Fulton, and Gwinnett) and CDC to investigate factors contributing to HIV spread, epidemiologic characteristics, and transmission patterns. Activities included review of surveillance and partner services interview data,(†) medical chart reviews, and qualitative interviews with service providers and Hispanic MSM community members. By June 2022, these clusters included 75 persons, including 56% who identified as Hispanic, 96% who reported male sex at birth, 81% who reported male-to-male sexual contact, and 84% of whom resided in the four metropolitan Atlanta counties. Qualitative interviews identified barriers to accessing HIV prevention and care services, including language barriers, immigration- and deportation-related concerns, and cultural norms regarding sexuality-related stigma. GDPH and the health districts expanded coordination, initiated culturally concordant HIV prevention marketing and educational activities, developed partnerships with organizations serving Hispanic communities to enhance outreach and services, and obtained funding for a bilingual patient navigation program with academic partners to provide staff members to help persons overcome barriers and understand the health care system. HIV molecular cluster detection can identify rapid HIV transmission among sexual networks involving ethnic and sexual minority groups, draw attention to the needs of affected populations, and advance health equity through tailored responses that address those needs.

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.

BACKGROUND: Multisystem inflammatory syndrome in children (MIS-C) rarely involves delayed giant coronary aneurysms, multiple readmissions or occurrence after COVID-19 vaccination. METHODS: We describe a child with all 3 of these unusual features. We discuss his clinical presentation, medical management, review of the current literature and CDC guidance recommendations regarding further vaccinations. RESULTS: A 5-year-old boy had onset of MIS-C symptoms 55 days after COVID-19 illness and 15 days after receiving his first BNT162b2 COVID-19 vaccination. He was admitted 3 times for MIS-C, and twice after his steroid dose was tapered. On his initial admission, he was given intravenous immunoglobulin and steroids. During his second admission, new, moderate coronary dilation was noted, and he was treated with intravenous immunoglobulin and steroids. At his last admission, worsening coronary dilation was noted, and he was treated with infliximab and steroids. During follow-up, he had improvement in his coronary artery dilatation. However, his inflammatory markers increased after steroid wean, and his steroid taper was further extended, after which time his inflammatory markers improved. This is the only such reported case of a patient who was admitted 3 times for MIS-C complications after COVID-19 vaccination. CONCLUSION: MIS-C rarely involves delayed giant coronary aneurysms, multiple readmissions, or occurrence after COVID-19 vaccination. Whether our patient's COVID-19 vaccine 6 weeks after COVID-19 illness contributed to his MIS-C is unknown. After consultation with the CDC-funded Clinical Immunization Safety Assessment Project, the patient's care team decided against further COVID-19 vaccination until at least 3 months post normalization of inflammatory markers.

Having health insurance is associated with better access to healthcare and lower rates of comorbidity in the general population, but data are limited on insurance's impact on adults with congenital heart disease (ACHD). The Congenital Heart Survey To Recognize Outcomes, Needs and well-beinG (CH STRONG) was conducted among ACHD in three locations from 2016 to 2019. We performed multivariable logistic regression to determine the associations between health insurance and both access to healthcare and presence of comorbidities. We also compared health insurance and comorbidities among ACHD to similarly-aged individuals in the Behavioral Risk Factor Surveillance System (BRFSS) as a proxy for the general population. Of 1354 CH STRONG respondents, the majority were ≤ 30 years old (83.5%), and 8.8% were uninsured versus 17.7% in the BRFSS (p < 0.01). Compared to insured ACHD, uninsured were less likely to report regular medical care (adjusted odds ratio [aOR] 0.2, 95% confidence interval [CI] 0.1-0.3) and visited an emergency room more often (aOR 1.6, CI 1.0-2.3). Among all ACHD reporting disability, uninsured individuals less frequently received benefits (aOR 0.1, CI 0.0-0.3). Depression was common among uninsured ACHD (22.5%), but insured ACHD had lower rates of depression than insured in the BRFSS (13.3% vs. 22.5%, p < 0.01). In conclusion, rates of insurance were higher among ACHD compared to the general population. Nonetheless, uninsured ACHD inconsistently accessed healthcare and benefits. Further studies are needed to determine if insurance ameliorates the risk of morbidity as ACHD age.

THIS REPORT SUMMARIZES THE EVIDENCE AND RATIONALE SUPPORTING THE COMPONENTS OF THE CSTE/CDC MIS-C SURVEILLANCE CASE DEFINITION AND DESCRIBES THE METHODS USED TO DEVELOP THE DEFINITION. THESE METHODS INCLUDED CONVENING MIS-C CLINICAL EXPERTS (I.E., CONSULTANTS): regarding identification of MIS-C and its distinction from other pediatric conditions, a review of available literature comparing MIS-C phenotype with that of pediatric COVID-19 and other hyperinflammatory syndromes, and retrospective application of different criteria to data from MIS-C cases previously reported to CDC.

BACKGROUND: Multisystem inflammatory syndrome in children (MIS-C) is a novel severe postinfectious condition associated with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). The purpose of this report is to describe nationwide trends in the evolving clinical management of MIS-C. METHODS: Patients with MIS-C were reported from state and local jurisdictions to the Centers for Disease Control and Prevention's (CDC's) MIS-C national surveillance system. Patients' case reports were reviewed to ensure that they met the CDC MIS-C case definition and had sufficient data for analysis. The prevalence of use of treatments for MIS-C, temporal trends in use of these treatments, and frequency of administration of different treatment combinations were analyzed. RESULTS: There were 4470 patients meeting the MIS-C case definition with onset dates from 19 February 2020 to 31 July 2021. The proportion of patients admitted to an intensive care unit (ICU) has declined over time, from 78.7% in April 2020 to 57.5% in June 2021 (P = .001). The most common treatments were intravenous immunoglobulin (IVIG), given to 85.6% of patients; steroids (77.7%), and antiplatelet medications (73.7%); use of each of these treatments has increased over time, particularly in patients not requiring admission to an ICU (all P < .001). Older patients and non-Hispanic Black patients were more likely to receive additional modes of therapy including vasoactive medication, noninvasive respiratory support, anticoagulation medication, and intubation/mechanical ventilation. CONCLUSIONS: IVIG, steroids, and antiplatelet medication have become increasingly utilized as standard treatment for MIS-C patients, while the use of other treatments may be contingent on the type and severity of clinical findings.