Risk Factors and Outcomes Associated with Gaps in Care in Children with Congenital Heart Disease.

Adults with congenital heart disease (CHD) benefit from cardiology follow-up at recommended intervals of ≤ 2 years. However, benefit for children is less clear given limited studies and unclear current guidelines. We hypothesize there are identifiable risks for gaps in cardiology follow-up in children with CHD and that gaps in follow-up are associated with differences in healthcare utilization. Our cohort included children < 10 years old with CHD and a healthcare encounter from 2008 to 2013 at one of four North Carolina (NC) hospitals. We assessed associations between cardiology follow-up and demographics, lesion severity, healthcare access, and educational isolation (EI). We compared healthcare utilization based on follow-up. Overall, 60.4% of 6,969 children received cardiology follow-up within 2 years of initial encounter, including 53.1%, 58.1%, and 79.0% of those with valve, shunt, and severe lesions, respectively. Factors associated with gaps in care included increased drive time to a cardiology clinic (Hazard Ratio (HR) 0.92/15-min increase), EI (HR 0.94/0.2-unit increase), lesion severity (HR 0.48 for shunt/valve vs severe), and older age (HR 0.95/month if < 1 year old and 0.94/year if > 1 year old; p < 0.05). Children with a care gap subsequently had more emergency department (ED) visits (Rate Ratio (RR) 1.59) and fewer inpatient encounters and procedures (RR 0.51, 0.35; p < 0.05). We found novel factors associated with gaps in care for cardiology follow-up in children with CHD and altered health care utilization with a gap. Our findings demonstrate a need to mitigate healthcare barriers and generate clear cardiology follow-up guidelines for children with CHD.

Health System Encounters after Loss to Cardiology Follow-Up Among Patients with Congenital Heart Disease.

OBJECTIVE: To analyze receipt of care at other locations within a single rural academic health system after loss to follow-up in a cardiology clinic. STUDY DESIGN: Patients with congenital heart defects seen in the clinic during 2018 and subsequently lost to cardiology follow-up were included in the study. We defined loss to follow-up as not being seen in the clinic for at least 6 months past the most recently recommended follow-up visit. Subsequent visits to other locations, including other subspecialty clinics, primary care clinics, the emergency department, and the hospital, were tracked through 2020. RESULTS: Of 235 patients (median age 7 years, 136/99 female/male), 96 (41%) were seen elsewhere in the health system. Of 96 patients with any follow-up, 40 were seen by a primary care provider and 46 by another specialist; 44 were seen in the emergency department and 12 more were hospitalized. Patients with medical comorbidities or Medicaid insurance and those living closer to the clinic were more likely to continue receiving care within the same health system. CONCLUSIONS: Patients with congenital heart defect are frequently lost to cardiology follow-up. Our study supports collaboration across specialties and between cardiology clinics and affiliated emergency departments to identify patients with congenital heart defect who have been lost to cardiology follow-up but remain within the health system. A combination of in-person and remote outreach to these patients may help them continue cardiology care.

Influence of Supervised Maternal Aerobic Exercise during Pregnancy on 1-Month-Old Neonatal Cardiac Function and Outflow: A Pilot Study.

PURPOSE: The objective of this study is to assess the effects of supervised, recommended levels of prenatal aerobic exercise on 1-month-old infant cardiac function. METHODS: Eligible pregnant women were randomly assigned to either an aerobic exercise group that participated in 150 min of supervised, moderate-intensity (40% to 59% V̇O 2peak , 12 to 14 on Borg rating of perceived exertion) aerobic exercise per week for 24 wk or more or a nonexercising group that consisted of 150 min·wk -1 of relaxation techniques. One-month-old infant echocardiogram was performed to assess infant cardiac function , including heart rate (HR), left-ventricular stroke volume, cardiac output, cardiac index, ejection fraction, fractional shortening, and velocity time integral at the aortic valve. Pearson correlation analyses and linear regression models were performed. RESULTS: Prenatal aerobic exercise was negatively correlated with infant resting HR ( r = -0.311, P = 0.02). Similarly, when controlling for infant sex and activity state, exercise level/volume ( ß = -0.316; 95% CI, -0.029 to -0.002; P = 0.02) predicted resting infant HR ( R2 = 0.18, P = 0.02). In infants of overweight/obese women, infants of aerobic exercisers had increased fractional shortening ( P = 0.03). In addition, infant ventricular ejection fraction was correlated with maternal exercise attendance ( r = 0.418, P = 0.03) as well as a trend for exercise level ( r = 0.351, P = 0.08). Similarly, the only significant regression model for infants of overweight/obese women controls infant activity state ( ß = -0.444; 95% CI, -0.05 to -0.01; P = 0.006) and maternal exercise level ( ß = 0.492; 95% CI, 5.46-28.74; P = 0.01) predicting infant resting HR ( F = 5.79, R2 = 0.40, P = 0.003). CONCLUSIONS: The findings of this study demonstrate that women participating in exercise in the second and third trimesters of their pregnancy may have infants with increased cardiac function at 1 month of age. Importantly, the cardiac function effects were further augmented for infants born to overweight/obese women.

Impact of Prenatal Diagnosis of Critical Congenital Heart Disease on Preoperative and Postoperative Outcomes.

The objective of this study was to assess the relationship of prenatal diagnosis of critical congenital heart disease (CHD) to preoperative and postoperative patient findings. Retrospective analysis of neonates with critical CHD who underwent cardiothoracic surgery at one of four centers in North Carolina between 2008 and 2013. Surgical data collected by sites for submission to the Society of Thoracic Surgeons Congenital Heart Surgery Database (STS-CHSD) and the North Carolina CHD Lifespan Database were queried. There were 715 patients with STS records; 558 linked to the NC-CHD database. Patients with prenatal diagnosis had a lower incidence of preoperative risk factors, including need for mechanical ventilation and presence of shock. However, prenatally diagnosed patients had worse short-term outcomes, including higher operative mortality, higher incidence of select postoperative complications, and longer LOS. There was no difference in one-year mortality. Our findings are consistent with current literature which suggests that prenatal diagnosis of critical CHD is associated with a more optimized preoperative clinical status. However, we found that patients with prenatal diagnoses had less favorable postoperative outcomes. This needs to be investigated further, but may be secondary to patient-specific factors, such as CHD disease severity.

Association of family characteristics with health status and needs among children with congenital heart disease.

INTRODUCTION: Low socio-economic status is associated with poorer quality of life among children with congenital heart disease (CHD), but this finding is based on disparities among children remaining under cardiology follow-up. We used a population-based health survey data set to analyse the impact of socio-economic status on health and functional status among children with CHD. MATERIALS AND METHODS: We used 2007-2018 National Health Interview Survey data, selecting children 2-17 years of age who had been diagnosed with CHD. Outcomes included caregiver-rated general health, presence of functional limitations, number of missed school days, need for special education, and need for special equipment related to the child's health conditions. Socio-economic status measures included maternal educational attainment, food stamp programme participation, poverty status, and insurance coverage. RESULTS: Based on a sample of 233 children with CHD, 10% had fair or poor health, 38% reported having any health-related limitation on their usual activities, 11% needed special equipment, and 27% received special education services. On multivariable analysis, lower maternal educational attainment was correlated with worse caregiver-rated health, and children without insurance were especially likely to experience functional limitations. Black children with CHD had significantly worse caregiver-rated health compared to White children (ordered logit odds ratio: 0.19; 95% confidence interval: 0.08, 0.45; p < 0.001). CONCLUSIONS: In a population-based survey of children with CHD, race and several measures of socio-economic status disadvantage were associated with worse health outcomes. Further evaluation of social determinants of health during cardiology follow-up may help improve outcomes for children with CHD in socio-economically disadvantaged families.

Clinical and socio-economic predictors of work participation in adult CHD patients.

BACKGROUND: Adults with CHD have reduced work participation rates compared to adults without CHD. We aimed to quantify employment rate among adult CHD patients in a population-based registry and to describe factors and barriers associated with work participation. METHODS: We retrospectively identified adults with employment information in the North Carolina Congenital Heart Defects Surveillance Network. Employment was defined as any paid work in a given year. Logistic regression was used to examine patients' employment status during each year. RESULTS: The registry included 1,208 adult CHD patients with a health care encounter between 2009 and 2013, of whom 1,078 had ≥1 year of data with known employment status. Overall, 401 patients (37%) were employed in their most recent registry year. On multivariable analysis, the odds of employment decreased with older age and were lower for Black as compared to White patients (odds ratio = 0.78; 95% confidence interval: 0.62, 0.98; p = 0.030), and single as compared to married patients (odds ratio = 0.50; 95% confidence interval: 0.39, 0.63; p < 0.001). CONCLUSION: In a registry where employment status was routinely captured, only 37% of adult CHD patients aged 18-64 years were employed, with older patients, Black patients, and single patients being less likely to be employed. Further work is needed to consider how enhancing cardiology follow-up for adults with CHD can integrate support for employment.

Short- and long-term safety and efficacy of bariatric surgery for severely obese adolescents: a narrative review.

The selection criteria, safety, and efficacy of bariatric surgery are well established in adults but are less well defined for severely obese adolescents. The number of severely obese adolescents who could benefit from weight loss surgery is increasing, although referral rates have plateaued. Surgical options for these adolescents are controversial and raise several questions. Recent studies, including the prospective Teen-Longitudinal Assessment of Bariatric Surgery Study and the Adolescent Morbid Obesity Surgery Study, help answer these questions. Early bariatric surgical intervention improves body mass index but, more importantly, improves cardiovascular and metabolic co-morbidities of severe obesity. A review of the medical, psychosocial, and economic risks and benefits of bariatric surgery in severely obese adolescents is a step toward improving the management of a challenging and increasing population. We describe the current knowledge of eligibility criteria, preoperative evaluation, surgical options, outcomes, and referral barriers of adolescents for bariatric surgery.

Significant Improvements in Mortality After the Fontan Operation in Children With Down Syndrome.

BACKGROUND: Down syndrome (DS) is considered a risk factor for mortality associated with the Fontan operation. The objective was to show the contemporary short-term outcome of the Fontan operation for a functionally univentricular heart in patients with DS and non-DS, along with an analysis of significant predictors for in-hospital mortality. METHODS: This was a retrospective study using The Society of Thoracic Surgeons Congenital Database to assess in-hospital mortality and its predictors in patients with DS and non-DS undergoing the Fontan operation over 16 years (2001-2016). The primary outcome was in-hospital mortality. Statistical analysis was performed using univariable and multivariable logistic regression models. RESULTS: Our study cohort consisted of 12,074 patients (81 DS and 11,993 non-DS). The overall in-hospital mortality rate significantly improved in the recent era (2009-2016): 2.4% to 1.3%, P < .001. The DS group had a higher in-hospital mortality rate (12.3% vs 1.6%, P < .001) with an odds ratio of 8.6 (95% confidence interval, 4.4-17.0). The DS group had a higher 30-day mortality rate, a longer median postoperative length of stay, and a higher incidence of postoperative complications. The multivariable model showed that DS was the strongest predictor of in-hospital mortality, with an odds ratio of 11.6 (95% confidence interval, 5.1-26.4), adjusted for other significant variables including era effect, weight, and primary cardiac diagnosis. CONCLUSIONS: The in-hospital mortality for the Fontan operation significantly improved in the contemporary era. DS was a significant risk factor for in-hospital morbidity and mortality associated with the Fontan operation.

Cardiac Rehabilitation for Adults and Adolescents With Congenital Heart Disease: EXTENDING BEYOND THE TYPICAL PATIENT POPULATION.

PURPOSE: Cardiac rehabilitation (CR) effectively decreases morbidity and mortality in adults after cardiovascular events. Cardiac rehabilitation has been underutilized for patients with congenital heart disease (CHD). The primary objective was to evaluate the inclusion of adolescents and adults with CHD in a CR program by analyzing data from our single-center CR program. The secondary objectives were to evaluate the efficacy and safety of CR as well as referral barriers. METHODS: This was a retrospective study of patients aged ≥15 yr who were referred to regional CR centers. Data on efficacy and safety were collected. RESULTS: Over a 4-yr period, 36 patients were referred to 23 regional centers: 23 patients completed CR, 12 are currently enrolled or in the referral process, and 1 died before initiation. The median age was 22 yr (range: 15-55). The primary indication was post-surgical (61%), followed by chronic heart failure (30%), and post-transplant (9%). After CR, metabolic equivalent tasks increased by 1.6 (P < .001), maximal heart rate increased by 13 beats/min (P = .026), exercise time increased by 1.35 min (P = .047), and treadmill speed increased by 0.7 mph (P = .007). There were no serious adverse events. All patients who completed CR remain alive at a median follow-up of 17 mo (range: 5-45). Common barriers to CR included accessibility, social circumstances, and cost for phase III CR. CONCLUSION: In our cohort, CR was effective and safe for adolescents and adults with CHD.