Experiences and Attitudes Toward Telemedicine in an Adult Congenital Heart Disease Clinic: Lessons Learned from the COVID-19 Pandemic.

The coronavirus disease 2019 (COVID-19) pandemic has driven a broader adoption of telemedicine (TM). We aim to describe adult congenital heart disease (ACHD) patient experiences with TM and explore factors associated with positive attitude toward future TM visits. This is a cross-sectional, single-center study in an outpatient ACHD clinic from February to June, 2022. Between-group comparisons were made using Wilcoxon-Rank Sum, Chi-Square, or Fisher-Exact tests. Univariate logistic regression was performed for variables that could correlate with a "positive" attitude toward future TM visits. Significance was determined using an alpha level of 0.05. Of 262 patients (median age 33 years, 55% female, 81% White), 115 (44%) had a prior TM visit and 110 (96%) reported a positive experience. There were 64 (24%) with a positive attitude toward future TM visits. Concerns include lack of cardiac testing and limited quality of visit. Patients with visits every 3-6 months (Odds Ratio [OR] 2.44; p < 0.01) and prior TM visit (OR 1.89; p = 0.03) had higher odds of a positive attitude toward future TM, whereas males had lower odds (OR 0.53; p = 0.04). Age, annual income, disease complexity, distance from clinic, and employment status were not associated. There is high rate of satisfaction with TM among ACHD patients but only one-quarter indicated interest in using TM in the future. Factors associated with interest in TM visits are identified, and together with patient feedback, can be used to understand potential role of TM for the ACHD population in the post-pandemic era.

Design of a multi-institutional neurocognitive discovery study in adult congenital heart disease (MINDS-ACHD).

BACKGROUND: Neurocognitive dysfunction (NCD) is a common comorbidity among children with congenital heart disease (CHD). However, it is unclear how underlying CHD and its sequelae combine with genetics and acquired cardiovascular and neurological disease to impact NCD and outcomes across the lifespan in adults with CHD. METHODS: The Multi-Institutional Neurocognitive Discovery Study in Adults with Congenital Heart Disease (MINDS-ACHD) is a partnership between the Pediatric Heart Network (PHN) and the Adult Alliance for Research in Congenital Cardiology (AARCC) that examines objective and subjective neurocognitive function and genetics in young ACHD. This multicenter cross-sectional pilot study is enrolling 500 young adults between 18 and 30 years with moderate or severe complexity CHD at 14 centers in North America. Enrollment includes 4 groups (125 participants each): (1) d-looped Transposition of the Great Arteries (d-TGA); (2) Tetralogy of Fallot (TOF); (3) single ventricle (SV) physiology; and (4) "other moderately or severely complex CHD." Participants complete the standardized tests from the NIH Toolbox Cognitive Battery, the NeuroQoL, the Hospital Anxiety and Depression Scale, and the PROMIS Global QoL measure. Clinical and demographic variables are collected by interview and medical record review, and an optional biospecimen is collected for genetic analysis. Due to the COVID-19 pandemic, participation may be done remotely. Tests are reviewed by a Neurocognitive Core Laboratory. CONCLUSIONS: MINDS-ACHD is the largest study to date characterizing NCD in young adults with moderate or severely complex CHD in North America. Its results will provide valuable data to inform screening and management strategies for NCD in ACHD and improve lifelong care.

Prolonged labor and adverse cardiac outcomes in pregnant patients with congenital heart disease.

BACKGROUND: Patients with congenital heart disease are at high risk for peripartum cardiac morbidity, yet data on the impact of duration of labor on cardiac outcomes are limited. Prolonged labor is a known risk factor for maternal morbidity, but the impact of prolonged labor on cardiac outcomes in patients with congenital heart disease has not been evaluated. OBJECTIVE: This study aimed to evaluate the association between prolonged labor (≥24 hours) and adverse peripartum maternal cardiac outcomes in pregnant patients with congenital heart disease. STUDY DESIGN: This was a retrospective cohort study of pregnant patients ≥18 years with congenital heart disease who received prenatal care and delivered at an academic institution between 1998 and 2020 with a singleton gestation. Pregnancies that ended <20 weeks' gestation and patients who underwent an outright cesarean delivery without exposure to labor were excluded. The primary outcome was a composite adverse maternal cardiac outcome that occurred intrapartum or up to 6 weeks postpartum, defined as the occurrence of 1 or more of the following events: heart failure or clinical volume overload requiring diuresis, pulmonary edema, arrhythmia requiring treatment, thromboembolic complications including deep vein thrombosis or pulmonary embolism, transient ischemic attack, stroke, endocarditis, myocardial infarction, aortic dissection, cardiac arrest, or cardiac death. Outcomes were compared between patients with prolonged labor (≥24 hours) and those without prolonged labor (<24 hours). An interaction between prolonged labor and cesarean delivery was evaluated. RESULTS: A total of 229 patients were included. The median duration of labor was 14 hours, and 18% of patients labored for ≥24 hours. Overall, 11.8% experienced the composite cardiac outcome with a significantly higher rate in the prolonged labor group (22% vs 9.6%; P=.03). After adjusting for confounders, including nulliparity, labor induction, gestational age, and World Health Organization class, there was a 2.7-fold increase in the odds of the composite cardiac outcome for patients who experienced prolonged labor (adjusted odds ratio, 2.7; 95% confidence interval, 1.1-7.1). There was no significant difference in cardiac outcome between those who had a vaginal delivery and those who had a cesarean delivery during labor (10.0% vs 16.1%; P=.18). There was, however, a significant interaction between prolonged labor and cesarean delivery; after adjustment for confounders, patients who underwent a cesarean delivery after prolonged labor had a 6.8-fold increase in the odds of experiencing the composite cardiac outcome when compared with those who underwent a cesarean delivery without prolonged labor (30.8% vs 7.1%; adjusted odds ratio, 6.8; 95% confidence interval, 1.4-32.5), most commonly, heart failure or volume overload requiring diuresis. CONCLUSION: In a cohort of pregnant patients with congenital heart disease, prolonged duration of labor ≥24 hours was significantly associated with an increased risk for an adverse peripartum cardiac outcome, especially among those who underwent a cesarean delivery after that time. These findings suggest that close attention should be paid to the duration of labor, and those who require a cesarean delivery after a prolonged labor should be monitored closely for signs of volume overload and other adverse cardiac events.

Pregnancy-related cardiac outcomes among patients with congenital heart disease after formalization of a cardio-obstetrics program.

BACKGROUND: The prevalence of pregnant patients with congenital heart disease (CHD) is increasing, and these patients are at high risk for cardiac morbidity. OBJECTIVE: This study aimed to examine the pregnancy outcomes in patients with congenital heart disease before and after the establishment of formal cardio-obstetrics collaboration between adult congenital heart disease and maternal-fetal medicine programs. STUDY DESIGN: This was a retrospective cohort study of pregnant patients with congenital heart disease from 2002 to 2020 at a single urban academic institution in the United States. This study included patients with a singleton pregnancy who continued a pregnancy beyond 20 weeks of gestation. The primary outcome was a composite adverse maternal cardiac outcome, compared before (2002-2010) and after (2011-2020) the program. The secondary outcomes included gestational age at delivery, mode of delivery, rate of labor induction, use of diuresis after delivery, and a composite maternal morbidity outcome. RESULTS: The number of pregnant patients with congenital heart disease increased after formalization of the cardio-obstetrics program (200 [postprogram group] vs 84 [preprogram group]; 0.48% of all deliveries in the postprogram group vs 0.25% of all deliveries in the preprogram group; P<.001). The postprogram group was more likely to undergo labor induction than the preprogram group (126 [63%] vs 34 [41%], respectively; P<.001). There were fewer patients in the postprogram group than in the preprogram group who were New York Heart Association class II to IV (23 [12%] vs 17 [22%], respectively; P=.04) or with systemic ventricular dysfunction (8 [4%] vs 12 [16%], respectively; P=.001). There was no difference in the primary outcome (38 [19%] in the postprogram group vs 14 [17%] in the preprogram group; P=.64), even after adjusting for confounders, including New York Heart Association class >I and systemic ventricular dysfunction (adjusted odds ratio, 2.3; 95% confidence interval, 0.96-5.4). Patients in the postprogram group were more likely to receive diuresis after delivery than patients in the preprogram group, even in the absence of heart failure or pulmonary edema (9 [4.5%] vs 0 [0.0%], respectively; P=.04). CONCLUSION: In the period after the establishment of a formal cardio-obstetrics program between adult congenital heart disease and maternal-fetal medicine, the number of patients with congenital heart disease delivering at our institution increased significantly. Overall, fewer patients entered pregnancy with advanced-stage heart failure or systemic ventricular dysfunction, possibly suggesting improved prepregnancy cardiac care or improved preconception counseling. Composite maternal cardiac outcomes were similar, but the rates of postpartum diuresis increased significantly, suggesting increased attention to volume status in the postpartum period. Formalized collaboration between congenital heart disease and maternal-fetal medicine may help better optimize patients' care before conception, during pregnancy, and after delivery.