BACKGROUND:We assessed healthcare access and utilization among adults with congenital heart defects (ACHD) across racial and ethnic groups using a US population-based sample. METHODS:The cross-sectional CH STRONG was conducted from 2016 to 2019 among ACHD in Arkansas, Arizona, and Atlanta. Participants completed a self-administered questionnaire on their healthcare access, utilization, health status, comorbidities, and demographics. Differences in healthcare access and utilization among non-Hispanic White (NH-White), non-Hispanic Black (NH-Black), and Hispanic ACHD were assessed, and adjusted prevalence ratios (aPRs) and 95% confidence intervals (CI) reported. Health-related quality of life (HRQOL) was also compared with standardized norms for the general population from the Patient-Reported Outcomes Measurement Information System (PROMIS). Models were adjusted for age, sex, educational attainment, marital status, study site, and CHD severity. RESULTS:Of 1455 respondents, 76.7% were NH-White, 15.0% were NH-Black, and 8.9% were Hispanic. Compared to NH-White, NH-Black ACHD were less likely to have health insurance (aPR = 0.94; CI: 0.88-0.99) and more likely to report a prior gap in insurance coverage (aPR = 1.88; CI: 1.44-2.46). They were also less likely to have a usual place of care (aPR = 0.82; CI: 0.75-0.89) or any healthcare visits (aPR = 0.88; CI: 0.81-0.96) but more likely to have ≥ 1 emergency room visit (aPR = 1.66; CI: 1.38-2.00) and hospitalization (aPR = 1.96; CI: 1.40-2.74) in the past year. Hispanic ACHD were more likely than NH-White to report a prior gap in insurance coverage (aPR = 1.78; CI: 1.19-2.65). CH STRONG ACHD did not differ from the general population on global mental-health and physical-health scores. CONCLUSIONS:Racial and ethnic differences in healthcare access and utilization exist among a population-based group of ACHD. Strategies for improvement in access to quality care may help reduce differences.

Background:Improved congenital heart disease (CHD) care allows >90% of patients to live into adulthood. Young adult CHD patients experience challenges managing their cardiac conditions and other comorbidities that may increase healthcare utilization. There are limited data on hospitalizations of adolescents and young adults with CHD, specifically during the transition from pediatric to adult care. We hypothesized increased healthcare utilization for CHD patients transitioning from adolescent to adult care. Materials and Methods:Retrospective review of the Vizient® Clinical Data Base (national, administrative database) for admissions from October 2019 to December 2023, aged 10-29 years with International Classification of Diseases-10 codes for moderate or severe CHD, stratified into age categories. Data included demographics, hospital outcomes, insurance status, admission through the emergency department (ED), and costs. Comparisons were made between the age groups. Results:There were 16,284 admissions during the study period. As age increased, the proportion of female admissions rose, with a higher prevalence of white admissions and a lower prevalence of Hispanic admissions. There was a decline in public insurance coverage, while rates of uninsured status and ED admissions increased with age. Mortality rates were highest at 15-19 years and 25-29 years. Conclusions:Despite increased admissions from the ED, complications, and mortality, healthcare costs declined between the younger and older age groups. There were higher rates of uninsured status and ED admissions for hospitalized young adults with CHD transitioning from pediatric to adult care. However, overall hospital costs decreased. More studies are needed to guide improvements in care during this at-risk time.

Studies suggest that in utero opioid exposure may be associated with congenital heart disease (CHD). We sought to assess the incidence of CHD in infants with neonatal abstinence syndrome (NAS). A review of a national, administrative database from January 2019 to December 2022 was conducted for neonates with an ICD-10 code for NAS and moderate or severe CHD. The incidence of CHD in NAS (the main outcome variable) was compared to those without NAS using χ2 analysis and odds ratios for CHD with significant differences. There were 4,994,919 neonatal admissions during the study period: 26,284 with NAS (2.3% had CHD) and 4,968,715 without NAS (1.1% had CHD) (p < .001). Odds ratios for five CHD types (atrioventricular septal defect, aortic coarctation/hypoplastic arch, double-inlet left ventricle, pulmonary valve stenosis, and pulmonary artery stenosis) were higher in NAS. There is the suggestion of a higher incidence of some forms of moderate and severe CHD in neonates with NAS.

Background:Transition from adolescence to adulthood is a change in status yielding self-sufficiency, independence, and participation in adult roles. There are numerous efforts to define transition elements and encourage formalized processes readying youth for adulthood, yet significant challenges remain. Methods:We recruited individuals who were age 12 years or older and not transitioned or 18 years and older who transitioned within 24 months to complete questionnaires and participate in a focus group. Results:25 participants (Mean age 17.9 years) completed questionnaires and 76 % participated in focus groups. Youth 18 years and older had mean scores in the reason for concern range on 7 of 9 NIH Toolbox scales de. Transition readiness was lower in adults across all five categories. Key themes include misunderstanding the concept of transition and self-determination in transition. Conclusions:Few youth understood what "transition" entails. Most considered it a single issue, such as aging out of insurance or leaving their pediatric specialist. Youth self-efficacy and life outlook declines in the late teens and early adulthood, exacerbating perceived inability to self-manage and gain independence. Most concerning is the emotional well-being and self-esteem of our adults who scored in the reason for concern range in 7 of 9 scales whereas adolescent peers did not. A directed attempt to create self-efficacy for youth in transition through training in health management, understanding the meaning of transition and promoting a positive perception prior to transition is needed.

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.

ABSTRACTBackgroundAlmost 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.MethodsData 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.ResultsAmong 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%).ConclusionsAdults 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.

Moderate and severe congenital heart disease (CHD) occurs in approximately 6 of 1,000 births,1,2 and more severe forms of CHD may require surgical or transcatheter interventions early in life. Owing to patient and procedural complexity, computed tomography imaging and cardiac catheterizations are increasingly used; however, these procedures are not without risk. Epidemiologic studies have shown an approximately linear relation between ionizing radiation exposure and cancer.1,3,4 Efforts to limit healthcare provider exposure to radiation have already been implemented; however, patients continue to be exposed to low-dose radiation with each imaging study.

Abstract Introduction While mortality rates have decreased in patients with congenital heart disease (CHD), numerous comorbidities associated with CHD persist, including decreased health-related quality of life (HRQOL), depressed mood, and sleep problems. Insomnia is known to worsen mood and HRQOL in children without CHD, therefore we examined the relationship between insomnia, mood and HRQOL. Methods We recruited 38 individuals with CHD between the ages of 4-25 years and assessed insomnia, health-related quality of life, anxiety, and depression using the Pediatric Insomnia Severity Index (PISI), Pediatric Quality of Life Inventory (PedsQL), Screen for Child Anxiety Related Disorders (SCARED), and Center for Epidemiological Studies Depression Scale for Children (CES-DC). T-tests were used to compare differences in HRQOL, anxiety, and depression in individuals with CHD with and without comorbid insomnia. Logistic regression was used to assess whether the presence of insomnia can predict increased odds of clinically significant anxiety or depression. Results Individuals with CHD and insomnia (PISI score ≥8) demonstrated significantly lower health-related quality of life, more depressive symptoms, and higher total anxiety compared to individuals with CHD without insomnia. Individuals with insomnia had a mean HRQOL score of 63.1 ± 15.6 vs 77.8 ± 18.9 in the group without insomnia (p=0.03). Individuals with insomnia had a mean total depression score on the CES-DC scale of 21.5 ± 14.6 vs 7.3 ± 5.6 for those without insomnia (p=0.009). Clinically significant depression in the insomnia group was 24 times greater (95% confidence interval [95% CI] 2.3-247.4, p=0.008) compared to those without insomnia. The mean total anxiety score for individuals with insomnia was 25.0 ±19.6 compared with 12.4 ± 10.3 in those without insomnia (p=0.03), and the odds of clinically significant anxiety in the insomnia group vs those without insomnia was 4.44 (95% CI 0.9-21.8, p=0.07). Conclusion Insomnia is associated with markedly worse HRQOL, depression and anxiety in individuals with CHD. Further study is needed to evaluate the role of insomnia recognition and treatment in order to improve HRQOL and mood in children and young adults with CHD. Support (if any) No support

Background: Young adults with congenital heart disease (CHD) are more likely to exhibit executive dysfunction and maladaptive coping yet are less likely to get diagnosed than the general population for psychiatric disorders. The etiology of psychiatric diagnosis is inconclusive amongst CHD populations, and more research is needed to evaluate risk factors contributing to psychiatric disorders, including executive function, coping mechanisms, anxiety, depression, fatigue and sleep disorders, parental style/involvement, and sense of coherence. Objectives: The study proposed to demonstrate the presence of risk for psychiatric diagnoses amongst young adults with CHD and evaluate factors contributing to mental health and executive dysfunction comorbidities. Methods: We used a mixed methods study of quantitative scales and a guided interview on a cohort of 11 young adults (18-24) with CHD who are considered in the American Heart Association high -risk group for developmental disorders or disabilities. We assessed for risk of anxiety and depression, maladaptive and disengagement coping, executive dysfunction, and other factors associated with mental health using the Reponses to Stress (RSQ), Patient Reported Outcomes Measurement Information System (PROMIS), and the Amsterdam Executive Function Inventory (AEFI) scales. Qualitative interviews focused on experiences living with CHD, social and family support, and executive functioning skills. Results: Our mean participant age was 20 years, and 36 % had some college education. PROMIS scoring showed increased risk for poor physical function (mean r = 31.8), anxiety (mean r = 64.9), depression (mean r = 66.8), and pain interference (mean r = 66.6). AEFI results also showed poor executive functioning skills, particularly in Self-Control/Self-Monitoring (mean 18.1) and Planning and Initiative (mean 5.3). 27 % of participants had medical record documentation of depression. Interviews showed participants overinflated sense of coherence and poor executive functioning, leading to two main themes: 1) perceptions of their disability, including denial of their CHD diagnosis and disengagement with mental health needs, and 2) challenges in transition care. Conclusions: Our study indicates a need for larger scale interventions for psychological young adults with CHD as part of the transition process to adult care.

Patients with Fontan physiology have reduced exercise performance compared to their peers as well as a higher incidence of bundle branch block (BBB). This study aims to investigate the association between BBB and exercise performance in the Fontan population through a retrospective review of the Pediatric Heart Network Fontan study public use dataset. "Low Performers" were defined as <= 25th percentile (for Fontan patients) for each exercise parameter at anaerobic threshold (AT) for gender and age and "Normal Performers" were all other patients. A total of 303 patients with Fontan physiology who underwent exercise testing reached AT and had complete data for BBB. BBB occurred more frequently in Low Performers for VO2 [OR (95% CI): 2.6 (1.4, 4.8)] and Work [OR (95% CI): 2.7 (1.4, 5.1)], suggesting that BBB in the Fontan population is associated with reduced exercise performance. This data adds to the existing clinical evidence of the adverse effects of conduction abnormalities on single ventricle cardiac output and adds support for consideration of cardiac resynchronization and multi-site ventricular pacing in this patient population.

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