Addressing Disparities in Pediatric Congenital Heart Disease: A Call for Equitable Health Care

Abstract

While significant progress has been made in reducing disparities within the US health care system, notable gaps remain. This article explores existing disparities within pediatric congenital heart disease care. Congenital heart disease, the most common birth defect and a leading cause of infant death, has garnered substantial attention, revealing certain disparities within the US health care system. Factors such as race, ethnicity, insurance coverage, socioeconomic status, and geographic location are all commonalities that significantly affect health disparities in pediatric congenital heart disease. This comprehensive review sheds light on disparities from diverse perspectives in pediatric care, demonstrates the inequities and inequalities leading to these disparities, presents effective solutions, and issues a call to action for providers, institutions, and the health care system. Recognizing and addressing these disparities is imperative for ensuring equitable care and enhancing the long‐term well‐being of children affected by congenital heart disease. Implementing robust, evidence‐based frameworks that promote responsible and safe interventions is fundamental to enduring change.

Nonstandard Abbreviations and Acronyms

CARES

Cardiac Arrest Registry to Enhance Survival

CCHD

critical congenital heart disease

Before diving into the actual disparities, inequalities, and inequities within health care, it is important to understand the distinction between these terms and how they are related. Disparity, inequality, and inequity are terms often used interchangeably, leading to misunderstandings about the challenges faced by children and their families affected by pediatric congenital heart disease (CHD). To set the stage for this discussion, we will distinguish between these concepts. Table 1 provides simplified definitions for clarity. Health disparity, as defined by the National Institutes of Health, is the difference in incidence, prevalence, mortality rate, and burden of disease and other adverse health conditions. In other words, disparity is the objective recognition of existing differences between groups and populations. ¹ Disparities are not arbitrary occurrences. They stem from a complex interplay of factors, including historical injustices, natural causes, systemic discrimination, or individual choices. Those factors that result in disparities are known as inequities and inequalities. Inequities are when the differences are unnecessary and avoidable, often unfair and unjust. Inequities are rooted in immoral choices within the health care system. ² In essence, disparity is the observed difference between populations, while inequities and inequalities are the underlying reasons or unjust circumstances causing the differences. While disparities can result from inequalities (inevitable causes like natural disasters or freely chosen behavior) and inequities within the health care system, the emphasis, as physicians, is on the moral and ethical dimensions of the latter.

Table 1.

Summary of Definitions and Examples of Disparity, Inequity, and Inequality Highlighting the Distinction Among the Three

Terms	Definition	Examples
Disparity	Recognition of differences among groups or populations 2	Black and Hispanic infants have higher congenital heart disease–related mortality rates than White infants 20
Inequity	Unjust, avoidable, or unfair differences that result in undeserved outcomes even if unintended. Inequities are disparities that should not exist 2	Limited availability of cardiac specialty clinics specifically in minority and poor neighborhoods 7
Inequality	Unequal distribution of resources, opportunities, or benefits among individuals or groups that are often due to inevitable causes or freely chosen behavior 2	Unequal distribution of health care facilities, where some regions have better access to specialized cardiac care than others

Considering the distinctions between disparity, inequality, and inequity, it becomes evident how these profoundly impact pediatric CHD across multiple domains. CHD is the most prevalent birth defect, and the leading cause of infant death, affecting about 1 in 100 live births. ³ , ⁴ Notably, non‐Hispanic Black and Native Hawaiian or other Pacific Islander populations experience nearly double the infant mortality rates compared with non‐Hispanic White populations. ⁵ Additional studies have shown that children of racial and ethnic minorities or low socioeconomic status (SES) have an increased risk of death and morbidity from CHD, ⁴ , ⁶ , ⁷ , ⁸ , ⁹ , ¹⁰ , ¹¹ as outlined in Table 2. These population groups encounter health disparity across 3 critical domains: health care access, quality and use of health care, and health outcomes. ¹² In this article, an in‐depth analysis of disparity‐causing health inequities was performed to understand potential underlying factors. The 4 most common populations that face pediatric CHD care disparities were described along with interventions to address these issues in the theme analysis. For visualization, the Figure shows the main disparities in each domain of pediatric CHD on the left along with the 4 key themes, interventions, and calls to action suggested to address these disparities and inequities. The goal is to contribute to a comprehensive understanding of health care disparities while advocating for equitable health care solutions.

Table 2.

Common Themes of Population and Specific Groups That Face Health and Health Care Disparities in Pediatric Congenital Heart Disease

Common themes	Interventions		Call to action
	Hard	Soft
Racial and ethnic minority groups	National Institute on Minority Health and Health Disparities Heritable disorders in newborns and children Medical school loan forgiveness	Cultivate, Optimize, Reinforce, and Enhance strategy by the Centers for Disease Control and Prevention Nongovernmental organizations Medical Student Advocate Program by the Philadelphia College of Osteopathic Medicine Patient–physician racial concordance	Increasing or encouraging more underrepresented minorities in medicine Provide instruction videos and safety kits to increase clinical communication skills and education with underserved low‐literacy patients Advocacy programs to address nonmedical needs of patients like psychosocial issues Advancing health care literacy for care delivery for both the patient and the providers
Uninsured groups	Affordable Care Act and Medicaid expansion Federally qualified health centers	Nongovernmental organizations	Expansion of Medicaid to southern states to minimize coverage gap Increased insurance for preexisting conditions Reimbursements for pediatric echocardiogram, ECG, and vital tests for uninsured
Low socioeconomic groups	Medicaid expansion and Affordable Care Act Earned income tax credit Medical school loan forgiveness Critical congenital heart disease newborn screening	Nongovernmental organizations Participatory learning and action techniques Maternal, Infant, and Early Childhood Home Visiting Program “Teach‐back” technique	Increase in public education spending and availability in lower and middle income. Manage diversity of approach, language, literacy, and culture by addressing the lack of knowledge about healthy behaviors (Coupe)
Rural regions	Telehealth Maternal, Infant, and Early Childhood Home Visiting Program Medical school loan forgiveness programs	Nongovernmental organizations Value‐based health care	Reimbursement policies to pay for care across state lines Increase networks that feed into primary care cardiologists Increase and normalize the use of telehealth Train community health workers to provide access to health and social services within rural areas

Figure 1. Infographic of addressing disparities in pediatric congenital heart disease (CHD): a call for equitable health care.

ICU indicates intensive care unit.

Access to Care

One of the most important sectors of health care is the ability to access not only quality health care services but diversity for comprehensive health care delivery. Not all children with congenital heart disease (CHD) have equal access to these vital health care services and resources. Geographical barriers play a significant role in disparities in access to health care. The United States has approximately 125 pediatric cardiology programs, most concentrated in urban areas. This concentration means that children residing in rural or remote areas can encounter challenges in accessing life‐saving specialized pediatric cardiology services. ⁶ The significance of this inequity is that mortality rates are lower for CHD children born to mothers living near specialized pediatric cardiac centers. ⁶ Rural communities often have fewer flexible incomes and limited transportation than their urban counterparts, exacerbating the issue. ⁷ In some cases, distances can reach up to 200 miles to reach the nearest pediatric cardiology specialist, necessitating an entire day from work and an overnight hotel, just to attend an appointment. ⁷ In the Amish community, for example, long distances can be difficult to travel and have more costs associated with transportation and time off work.

In addition to geographical barriers, financial constraints present another layer of complexity in accessing comprehensive care for children with CHD. Lower‐income families and neighborhoods can encounter financial challenges related to insurance quality, specialty availability, and outpatient follow‐up care. ⁷ For inpatient pediatric care, lower SES patients were less likely to use high‐quality hospitals and health care and had lower rates of prenatal detection of CHD. ⁴ , ⁷ As a result, there is a significant gap in relevant referrals to pediatric cardiology specialists and limited access to appropriate care. Even those who obtain appropriate referrals still experience a disparity because of a lack of knowledge regarding the importance of long‐term follow‐ups. ⁷ On average, families with lower income, fewer college graduates, and non‐private insurance were likely to not attend follow‐up appointments after infant cardiac surgery. ⁹ Additionally, the self‐pay or uninsured patient population is more likely to refuse necessary doctor visits, diagnostic testing, and treatments due to high financial expenses for treating pediatric CHD. ⁷ The introduction of Medicaid and the Affordable Care Act (ACA) aimed to alleviate these disparities by expanding health care coverage for the uninsured. However, despite these efforts, Medicaid beneficiaries still incur higher costs compared with private insurance. ⁸ A study by Williamson et al examined 132 745 hospitalizations for congenital cardiac surgery from 2010 to 2018 where 56.4% were covered by Medicaid. The findings showed that, on average, Medicaid‐insured patients carried an additional $21 600 financial burden per patient compared with private insurance. This resulted in a total hospitalization cost difference of $4.54 billion between Medicaid and private insurance patients. ⁸

Outcomes

Another critical sector of health care and an important measuring tool for disparity is outcomes. Health outcomes can reveal inequities and inequalities, particularly concerning race, SES, and type of insurance. Studies indicate that Black and Hispanic infants have higher CHD‐related mortality rates than White infants, with increased odds ratios for both critical and noncritical CHD. ¹³ , ¹⁴ , ¹⁵ , ¹⁶ , ¹⁷ These infants may also experience longer hospital stays and more complications. Interestingly, implicit bias from health care providers has been identified as a potential contributing factor to these disparities. ¹⁸ , ¹⁹ A study demonstrated the significant impact implicit bias has on provider decision making and judgments for their patients. ²⁰

In conjunction with these disparities, lower SES neighborhoods and patients face higher mortality rates for critical CHD (CCHD) and have worse comorbidities and lower quality‐of‐life scores, especially in the age range of 8 to 18 years. ¹³ Regarding diagnosis and access, it is known that prenatal diagnosis of CHD leads to better outcomes. However, patients with lower SES are less likely to have a prenatal diagnosis due to a lack of screening. ¹⁶ One study found that the density of sonographers played a critical role in prenatal screening and diagnosis for both critical and noncritical CHD. ²¹ Lower socioeconomic neighborhoods had inadequate access to sonographers, leading to this disparity. The same group also discovered that private insurance was the best predictor of prenatal diagnosis. ²¹ Individuals with access to private insurance improve their diagnosis, treatment, and CHD management. Erickson et al ²² found that children with CHD on private insurance were often patients at hospitals with lower mortality rates than those with public insurance.

Additionally, uninsured infants with CCHD have higher mortality rates compared with privately insured ones. ²² Even though Medicaid was designed to address these disparities, those disparities still exist despite all participants being insured. For instance, Medicaid‐insured children experienced higher mortality rates compared with those with commercial insurance. ²²

Several observational studies continue to identify various SES factors (ie, poverty, access to care, and insurance status) playing a role in the outcomes of CHD. ¹⁶ , ¹⁷ , ²¹ , ²² , ²³ Maternal education has emerged as a potential explanation for the large percentage of poor outcomes seen in Hispanic patients compared with non‐Hispanic White individuals with hypoplastic left heart syndrome and dextro‐transposition of the great arteries. Education levels remain a strong indicator of SES disparity in other health‐related subspecialties. ²⁴ Maternal education continues to be the strongest associated factor of racial and ethnic disparity.

Insurance

Acute and chronic health conditions can pose significant challenges for many families. Over the past 5 decades, the typical American household structure has shifted from single‐working parents to dual‐income households, rendering them more susceptible to stressors such as poor health and disability. At the same time, there has also been an increase in single‐parent households, exacerbating the impact of disability and caregiver strain. Families with children who have disabilities and chronic health needs are particularly vulnerable to these stressors. Caregivers are often underemployed due to the increased care demands of a child with a disability, leading to caregiver strain and burnout. Reliable child care can be harder to secure due to the complex medical, emotional, and cognitive needs of the child, further contributing to caregiver underemployment and financial strain. These unfortunate situations raise the likelihood of employer‐sponsored health insurance coverage disruptions and access to care for children with acute and chronic health needs.

Children living in households with incomes ranging from 100% to 300% of the federal poverty level have access to health plans through Medicaid, Children's Health Insurance Program, or a Qualifying Health Plan via the marketplace Qualifying Health Plans based on state guidelines and eligibility. Among this group, ≈42% of children with higher incomes and 78% of those below the federal poverty level rely on public and safety net insurance. ²⁵ Understanding the variability within these health plan options is crucial because recent research has demonstrated disparities in health outcomes, including access to primary and specialty care, obtaining referrals and health care services, insurance meeting medical needs, and out‐of‐pocket costs. In a study conducted by Kreider et al, it was found that Qualifying Health Plan programs and private insurance were likely to meet preventative and specialty demands, but they were less likely to meet pediatric health needs and had significantly higher out‐of‐pocket costs; the gap in outcomes was even more significant when examining the children with special health care needs. ¹⁰

The ACA of 2010 aimed to address health disparities through strategies that included creating a marketplace for individuals with incomes up to 400% of the federal poverty level and offering subsidies for qualifying health plans. However, limitations in the law, including unclear definitions of pediatric services across states and eligibility for essential health benefits based on state‐specific norms, have led to uneven health care coverage. ²⁶ These essential health benefits encompass various health care services, including ambulatory patient care, emergency services, hospitalization, maternity and newborn care, mental health and substance use disorder services, prescription drugs, rehabilitative and habilitative services, laboratory services, preventative and wellness services, and chronic disease management.

Fetal

Prenatal detection of CHD decreases morbidity and death for infants with CHD. ²⁷ With advances in imaging technology, CHD has increasingly been diagnosed in the prenatal period, ²⁸ with about 45% diagnosed in populations without known risk factors for CHD. ²⁹ However, research continues to demonstrate ongoing disparities between who receives a prenatal diagnosis and who does not. Prenatal diagnosis is less likely if the mother lives in a rural area, has a lower SES, or does not have private insurance. ¹⁷ , ²¹ , ³⁰ , ³¹ , ³² Between 2003 and 2006, an analysis of 444 patients presenting to Boston Children's Hospital with CCHD demonstrated that 35% of patients in the lowest SES composite score quartile versus 62% of those in the highest SES quartile had a prenatal diagnosis. ³¹ A Children's Hospital of Wisconsin study demonstrated that families living in impoverished or rural areas were at the highest risk of not having a prenatal diagnosis. ³⁰

Neonatal

There have been major leaps and bounds regarding neonatal care, but addressing extreme prematurity and improving outcomes for this population remains a challenging issue. Extreme prematurity continues to be a major factor in infant morbidity and death and remains a significant economic burden on the health care system. ³³ Simultaneously, advances in perinatal medicine have inadvertently led to disparities in outcomes, particularly affecting certain racial and ethnic groups, resulting in poorer health outcomes. Regarding neonates with cardiac disease, these disparities continue and potentially appear to be more pronounced. The challenge extends beyond addressing and treating the complexities associated with prematurity and encompasses the diversity of care for cardiac diagnoses within pediatric health. Despite ongoing efforts to standardize care and reduce risks while improving outcomes, the changes in death and morbidity have not been as dramatic as hoped.

The racial and ethnic disparity in pediatric health outcomes has been a challenging problem in the United States. Regardless of how it is measured, children of racial and ethnic minorities have poorer outcomes than their White peers. Several studies have suggested a relationship between race and ethnicity and various outcomes in CHD. In neonatal medicine, Black infants are 50% more likely to be born preterm and twice as likely to be born preterm than White infants. ³³ , ³⁴ This disparity has been established previously and continues to be seen in more contemporary cohorts. ³⁵ Although survival has improved over time in general for various subtypes of CHD, ³⁶ the disparity, as documented in the US population, remains evident in outcomes between those who are non‐Hispanic White versus non‐Hispanic Black or Hispanic. Other factors have been shown to play a role in health care disparities. For instance, a study from Levy et al²⁸ found that children from lower‐income neighborhoods have a higher mortality rate, longer lengths of stay, and use more inpatient resources than children from higher‐income communities. Racial, insurance, or hospital admission differences only partially explain these differences. However, the disparity in health outcomes persists across varying ages, races, ethnicities, insurance types, and geographic regions. This phenomenon holds even for children undergoing high‐risk procedures, low‐risk procedures, and children admitted to hospitals for any reason, with or without a significant chronic condition. ³⁷

In a study by Lasa et al, ³⁸ significant disparities in outcomes after hospital discharge were observed between racial cohorts. Specifically, non‐White neonatal patients at lower risk on the basis of surgical intervention (Risk Adjustment for Congenital Heart Surgery‐1 categories 2 and 3) were found to have a higher risk of death after discharge than their White counterparts. Interestingly, the racial disparity was not observed for those categorized in the more complex Risk Adjustment for Congenital Heart Surgery‐1 categories 4 to 6.

Beyond infants born prematurely with CHD, neonatal cardiac mortality rates are markedly influenced by the proximity of a mother to a metropolitan area and her access to a pediatric cardiac center. The association remains strong even after accounting for all maternal and infant factors. Access to specialized care is likely to impact these outcomes and prompt conversations about the regionalization of pediatric cardiac care, as is the case in the neonatal health care specialty.

CHD Surgery and Cardiac Critical Care

In an analysis of the 2016 Healthcare Cost and Utilization Project Kids Inpatient Database, low SES along with Black race was associated with a higher mortality rate among children with CHD who were undergoing a noncardiac procedure and longer hospitalizations. ³⁹

Examining the CARES (Cardiac Arrest Registry to Enhance Survival) database for out‐of‐hospital pediatric cardiac arrests, it was observed that non‐White children were less likely to receive bystander cardiopulmonary resuscitation after a cardiac arrest. ⁴⁰ Moreover, when neighborhoods were categorized on the basis of education, income, employment, and racial composition, children in areas with greater socioeconomic disadvantage were less likely to receive bystander CPR during an out‐of‐hospital cardiac arrest. This highlights the risk profile of children with CHD living in socially disadvantaged neighborhoods and underscores the need for increased awareness regarding health‐seeking behavior and response to cardiac arrest.

In a study using the North Carolina Birth Defects Registry data from 2004 to 2013, non‐Hispanic Black race and ethnicity was associated with a higher risk of death in children with both critical biventricular and noncritical CHD. Unmarried status was linked to a greater risk of death in cases of critical biventricular CHD. ¹¹ Interestingly, higher maternal education was associated with a lower risk of death in patients with noncritical biventricular CHD. This suggests that socioeconomic factors play a significant role in determining outcomes, even in cases in which patients should clinically fare well, indicating room for intervention. ¹¹

A retrospective analysis of the Kids’ Inpatient Database from 2003, 2006, and 2009 revealed that Hispanic ethnicity was linked to more postoperative complications, while Black and “other” race or ethnicity was associated with a higher likelihood of failure to rescue postoperatively. ⁴¹ Black and other non‐White children were also more likely to die without extracorporeal membrane oxygenation support after heart surgery compared with White children, suggesting the need for more equitable resource allocation. ⁴² Specifically, in children with single‐ventricle physiology, those from more socially disadvantaged households tended to spend longer postoperative periods in the hospital and had more days admitted in the first year of life. The deprivation index, used as a measure of social disadvantage, was also associated with death in the first year of life. ⁴³

Heart Failure/Transplant

Racial and Ethnic and Socioeconomic Disparities in Heart Failure and Transplant

Racial and ethnic and socioeconomic factors influence outcomes for children with heart failure and those listed for and undergoing heart transplants. ⁴⁴ , ⁴⁵ , ⁴⁶ , ⁴⁷ Data from the Kids' Inpatient Database in 2003, 2006, 2009, and 2012 show that Black and Hispanic children with myocarditis or cardiomyopathy are more likely to require extracorporeal membrane oxygenation support and have a higher risk of in‐hospital death. ⁴⁸ A national study evaluating the burden of pediatric heart failure in the United States found that heart failure–related deaths were more often noted in Hispanic children. ⁴⁴

A couple of studies showed that SES and a patient's race played a role in denials for heart transplant listing. ⁴⁸ , ⁴⁹ Furthermore, Black children listed for heart transplants were not only sicker at listing but also had a 25% increased risk for waitlist death compared with White children. ⁴⁵ Similarly, children with end‐stage heart failure from socioeconomically disadvantaged neighborhoods are more likely to present in extremis than those residing in more prosperous communities. ⁴⁶ This suggests clinician bias in referral for racial and ethnic minorities and those from poor neighborhoods. ⁵⁰

Black and Hispanic individuals have lower graft survival and are at an increased risk of rejection, even when controlling for genetics and insurance status. ⁵¹ , ⁵² Though they do not know why, it is suggested that SES plays a role, with an interaction between race and SES. For instance, lower‐income families have worse graft survival, while higher family income is linked to improved in‐hospital survival. ⁵³ Black race and Medicaid insurance are also associated with medication nonadherence, which in turn leads to worse transplant outcomes. ⁵⁴ Factors linked to nonadherence include lower parental education levels, parental psychosocial issues, nonprivate insurance, financial limitations, and family conflicts. ⁵⁴ , ⁵⁵ Nonprivate insurance is linked to greater academic adjustments, indicating educational delays and more morbidity in children after heart transplantation, emphasizing the impact of socioeconomic factors on long‐term outcomes. ⁵⁶

Electrophysiology

The degree and effects of racial disparities in pediatric electrophysiology are understudied. There are racial differences in electrocardiophysiology properties in both health and disease, which can impact the care of non‐White patients and contribute to a disparity of health care outcomes.

ECG Normative Values

The widely used pediatric ECG reference data set, the Davignon criteria, lacks consideration of sex or race diversity. ⁵⁷ Studies in more racially diverse populations have shown higher R wave amplitudes in V6, particularly in Black children aged >3 years, compared with White or other/mixed‐race children. This can potentially lead to overdiagnosis of left ventricular hypertrophy in Black patients during ECG screenings for sports participation. ⁵⁷ The European Society of Cardiology and Seattle Criteria, which set guidelines for ECG abnormalities in athletes, resulted in a high rate of abnormal ECG findings, especially in Black athletes. ⁵⁸ , ⁵⁹ , ⁶⁰ The Seattle Criteria reduced abnormal ECG rates in Black athletes from 40.4% to 18.4% but had a low true‐positive rate for detecting serious cardiac disease (0.47%). ⁶⁰ The most recent international criteria updated sports participation recommendations, considering the influence of race on ECG findings. ⁶¹ , ⁶² They specified normal repolarization variants in Black athletes, significantly reducing false positives without compromising sensitivity. However, a higher proportion of abnormal ECGs persists in Black athletes.

Arrhythmias and Ablation

Racial disparities exist in pediatric arrhythmia studies. In a multicenter supraventricular tachycardia ablation study, White children were overrepresented, while Black, Hispanic, and Asian children were underrepresented. In a pediatric extracorporeal membrane oxygenation registry, non‐White infants aged <1 year with arrhythmias (without CHD) had lower survival rates. ⁶³

Inherited Arrhythmia Syndromes

There is a well‐recognized issue of ethnic diversity underrepresentation in reference libraries and population databases. ⁶⁴ Genomic libraries in the early stages intentionally overrepresented participants of European descent to achieve homogeneity and larger sample sizes, and subsequent expansions primarily occurred in Asian countries. Consequently, African, Middle Eastern, Hispanic/Latino, Indigenous, and mixed‐race populations are significantly underrepresented in genome‐wide association studies. ⁶⁵ Population databases, which contain large collections of sequenced genomes, serve as benchmarks for allele frequency and help differentiate common genetic polymorphisms from potentially pathogenic variants. The limited global ethnic diversity in these databases hinders the accurate interpretation of genetic risk in underrepresented populations and remains a barrier to the broader adoption of precision medicine. Notably, the allele frequency for variants associated with several inherited arrhythmia conditions varies by ethnicity, such as long QT syndrome ⁶⁶ and Brugada syndrome. ⁶⁷ Polymorphisms more prevalent in non‐White populations may interact with environmental and additional genetic factors to increase the risk of sudden death, ⁶⁸ representing a mechanism of sudden death less commonly observed in White populations.

Cardiac Implantable Electronic Devices

Out‐of‐hospital cardiac arrest results in >350 000 deaths annually among the total US population ⁶⁹ Black Americans face a disproportionate burden of out‐of‐hospital cardiac arrest and have lower survival rates. ⁷⁰ The most effective treatment for sudden cardiac death is implanting an implantable cardioverter‐defibrillator (ICD). ⁷¹ However, Black Americans are less likely to receive an implantable cardioverter‐defibrillator. ⁷² Additionally, Black and Hispanic patients experience higher complication rates and longer hospital stays when undergoing lead extractions. ⁷³

Clinical Trials

Clinical trials play a pivotal role in advancing medical knowledge. Randomized clinical trials are used to inform evidence‐based medicine that then is used to make recommendations for all populations. However, these trials have been historically known to lack diversity and representation. ⁷⁴ , ⁷⁵ , ⁷⁶ The total percentage of minority inclusion from all randomized clinical trials published in the United States during the past 25 years was 3.95%. ⁷⁷ When looking at pediatric literature, only 9% of non‐English speakers were included in pediatric medical research, with Spanish being the most included language. ⁷⁸ Chen et al reported that Black individuals are underrepresented in clinical trials involving Food and Drug Administration–approved drugs for cardiovascular conditions, while White US residents were overrepresented, ⁷⁵ even though there were known differences in clinical phenotypes. Disparities in enrollment for genetic mutation clinical trials have also led to a disparity in biased genetic databases. ⁷⁹ Women have also been underrepresented in cardiovascular disease clinical trials even though there are sex‐based differences in the pharmacokinetics and pharmacodynamics of drugs. ⁷⁴ , ⁷⁶ Clinical trials with underrepresented demographic diversity can result in inappropriately generalizing treatments and results to the larger public, which can lead to worse outcomes in specific populations.

Theme Analysis

In recognizing the existence of health care disparities within pediatric CHD care, it is essential to reiterate the critical role that health care inequities play in perpetuating these disparities. These inequities are deeply rooted in the health care system, and it is the moral and ethical responsibility of providers and health care professionals to rectify these inequities. This theme analysis aims to shed light on the population groups that are disproportionately affected by these inequities and delve into both “hard” and “soft” interventions that have demonstrated their efficacy in reducing overall disparities. “Hard interventions” encompass policies or concrete actions that often involve structural or systemic changes. These interventions entail tangible and measurable modifications to existing practices and institutions. In contrast, “soft interventions” focus on behaviors, education, and raising awareness to shift attitudes, beliefs, ideas, and norms related to the health care system. While its impact may not result in an immediate, quantifiable outcome, it can lead to long‐term cultural changes. Both hard and soft interventions are necessary as they work in tandem to bring meaningful change. A summary of the population groups within pediatric CHD health care disparities, hard and soft interventions, and calls to action can be found in Table 2 and visualized in the Figure.

Racial and Ethnic Minorities

One common group that faces health care disparities in pediatric CHD is racial and ethnic minorities. However, certain interventions have been put into place to address these issues. Some initiatives include diversifying the physician workforce and expanding CHD screening. As described in Table 2, the National Institute on Minority Health and Health Disparities funds research and calls for a more diverse health care workforce. Their goal is to encourage more underrepresented minorities in medicine to increase patient–physician racial concordance. ⁸⁰ Multiple studies have shown that racial concordance between the physician and patient leads to better health outcomes. ¹⁹ , ⁸⁰ , ⁸¹ For example, Greenwood et al found that the infant mortality rate for Black infants under the care of a Black physician halved compared with Black infants under the care of a White physician. ¹⁹ , ⁸¹ The Heritable Disorders in Newborns and Children now require CCHD screening as part of the Uniform Screening Panel for newborns to include additional testing to detect and diagnose a wider range of illnesses. ³ Overall, the program showed a 33.4% and 21.4% decrease in early deaths from CCHD and unspecified cardiac diseases, respectively. ³ By offering the same screening opportunities to all newborns, regardless of their racial or ethnic background, equal access to preventative care is ensured.

Programs such as the National Health Service Corps offer hard interventions, like providing medical school loan forgiveness, to support underrepresented minorities in underserved communities. ⁸² This initiative seeks to increase the representation of minority health professionals in communities facing disparities, ultimately increasing patient–physician racial concordance. Programs like the Medical Student Advocate program emphasize holistic patient care. They train medical students to assist in nonmedical needs like transportation and insurance coverage for appointments. ⁸³ The Cultivate, Optimize, Reinforce, and Enhance strategy introduced by the Centers for Disease Control and Prevention serves as the foundation for any health care providers and institutes to follow, promoting equitable health care. Nongovernmental organizations such as Project Implicit introduced the Implicit Association Test. The goal of the test is to analyze the implicit bias of individuals and to educate health professionals on their subconscious assumptions leading to biased decisions and behaviors. ⁸⁴ To match any educational level of the patient, The Agency for Healthcare Research and Quality uses the Universal Precautions Toolkit to ensure that educational materials match the patient's level of understanding. The toolkit includes instructional videos and safety kits and promotes using the “teach back” technique to confirm patient comprehension. ⁸⁵

Insurance

Lack of adequate insurance coverage poses financial challenges and can lead to health care limitations, delays, and adverse outcomes. As highlighted by Peyvandi et al, children with CHD covered by private insurance receive more frequent care and experience lower mortality rates than those with public insurance. ⁸⁶ Though uninsured rates reached an all‐time low in 2023, Hispanic and non‐Hispanic Black individuals are still 3.6 and 1.5 times, respectively, more likely to be uninsured compared with White individuals. ⁸⁷ As noted in Table 2, certain interventions like the ACA and Medicaid expansion, federally qualified centers, and nongovernmental organizations have been introduced to alleviate disparities associated with insurance.

Federally qualified health centers were established as part of the U.S. primary care safety net to offer primary care services regardless of one's ability to pay, with a particular focus on uninsured and underserved populations. With additional funding from the ACA, federally qualified health centers extended their services to around 18.4 million residents in medically underserved communities. ⁸⁸ Some nongovernmental organizations also offer testing access to uninsured patients. For instance, the Patient Advocate Foundation provides a no‐cost service to patients facing out‐of‐pocket expenses for prescription medications due to chronic and life‐threatening illnesses, including CHD. ⁸⁹ Uninsured patients with CHD can access echocardiograms, ECGs, and vital tests (blood pressure, heart rate, and oxygen saturation) for free through these initiatives. While these organizations serve as a temporary solution for addressing health inequities, it is important to recognize that they are not a sustainable policy solution in the long term.

In 2010, the ACA was introduced to offer affordable private health insurance options and expand Medicaid eligibility for uninsured low‐ and middle‐income households. The Medicaid expansion, a cornerstone of ACA, relaxes the eligibility criteria for Medicaid enrollment by covering all individuals at or below 133% of the federal poverty level. The ACA also increased Medicaid reimbursement rates for primary care services, expanded parental insurance coverage for young adults up to age 26, and provided federal match funding for medical homes for individuals with chronic conditions. The ACA, along with the Medicaid expansion, shows promise in reducing this “coverage gap,” as within the first 5 years, the uninsured rates among Black and Hispanic individuals decreased by 8%, compared with a 4% drop among uninsured White individuals. Despite this progress, some southern states with a higher concentration of Hispanic individuals have not adopted Medicaid expansions, leaving >2.5 million people in the “coverage gap” category: those who could be insured by a Medicaid‐expanded state but are not due to their state's current policies. ⁹⁰ Medicaid expansion across all states has the potential to provide coverage to these 2.5 million uninsured individuals and potentially reduce these disparities among the uninsured. Insurance expansion has raised concerns that their access would be problematic with higher demands for care within the system, but studies have yet to find that to be necessarily true. A simulated study examining access to first‐time appointments in primary care to be reasonably stable between 2012 and 2014 with the expansion of the ACA and the inclusion of an additional 12 million patients. ⁹¹ Moreover, the ACA promoted data collection and research on health disparities, supported initiatives to increase the diversity of health care providers and cultural competency training, and elevated the National Center on Minority Health and Health Disparities to a full Institute.

Lower SES Groups

Individuals with lower SES face significant barriers to health care access due to financial constraints, limited resources, and structural challenges, leading to worse health outcomes. Children from disadvantaged backgrounds are at higher risk of death and morbidity from CHD as outlined in Table 2. ⁶ , ¹² , ¹⁹ , ⁸⁰ , ⁸⁶ Socioeconomic disparities in pediatric CHD outcomes are influenced by factors such as education, access to material resources, and maternal health. ⁸⁶

To address these disparities, various soft interventions focus on patient‐centered care by addressing social determinants of health (SDOH) within a household. Social determinants of health are nonmedical conditions and living environments that influence health outcomes. A key factor contributing to these disparities is the lack of health care literacy and understanding of how to use appropriate care. Health care literacy is important for patients because it is the ability to find, understand, and use health‐related information and services for themselves and others. ⁹² Low health literacy has been associated with poor disease self‐management, with disparities observed among racial and ethnic minority groups, particularly affecting Black and Hispanic individuals compared with White individuals. ⁹³ While some perceive health care literacy in terms of anatomic or medical knowledge, it also includes understanding the complexities of the health care system itself. ⁹² . It is equally important to know how to navigate Medicaid and commercial insurance coverages and rules to limit unnecessary payments or visits. An additional aspect to consider is how different cultures and communities may have different expectations of the health care system. These differing expectations can influence patient's understanding of the health care information and their ability to advocate for themselves in a medical setting. A cultural humility framework within a medical institution is key to effectively engineering with patients and local communities. With a mix of both quantitative and qualitative study methods, health care systems can better understand cultural nuances and advance common and shared goals for a community using both metric and narrative feedback.

Another effective approach to address this issue is through participatory learning and action techniques. One of the core principles of participatory learning and action techniques is to foster a sense of community and empowerment by involving local residents in local health care education seminars and decision‐making processes. This inclusive approach will create a sense of shared responsibility and help them understand the complexities of their health issues. Participatory learning and action techniques have demonstrated their effectiveness in increasing community engagement with health systems, especially in lower‐middle‐income countries. ⁹⁴ By actively participating in the learning and decision‐making process, individuals from low‐SES groups become more informed and are better equipped to advocate for themselves. Participatory learning and action techniques also offer a platform for voicing their concerns, bridging the gap between their circumstances and the health care system.

As previously mentioned, efforts to expand safety net insurance through the ACA and Medicaid expansion have significantly benefited individuals and families with low SES. In addition, programs like the earned income tax credit have been used to boost the financial well‐being of low‐income working families. Particularly in low‐income Black mothers, earned income tax credit participation has been associated with reductions in low birth weights, increased rates of prenatal care, and overall improved health outcomes for children. ⁸³ Maternal infant and early childhood home visiting programs extend evidence‐based home visiting services to at‐risk patients with low SES, promoting healthy living, parenting education, and child maltreatment prevention through at‐home services. ⁹⁵

Rural Regions

Health care disparities in rural areas pose geographic challenges for infants and children in accessing medical services. Limited health care infrastructure, provider shortages, and geographic barriers contribute to disparities in health care access and outcomes. One example, as provided in Table 2, of how to address health care disparities in rural areas is the Kentucky Homeplace program. This program trains community health workers to deliver health care and social services, including public health information, chronic disease self‐management programs, eye exams, and eyeglasses, in medically underserved rural counties. Since its establishment in 1994, the program has served over 180 000 patients and provided more than 5 million services. ⁹⁶ The ACA established the Maternal Infant and Early Childhood Home Visiting program to enhance the health of at‐risk communities, including children aged up to 5 years, pregnant women, and expectant fathers, through evidence‐based home visiting programs. Other programs like the Maternal, Infant, and Early Childhood Home Visiting program follow the same mission and values as the Kentucky Homeplace. The goal of Maternal, Infant, and Early Childhood Home Visiting is to give at‐risk pregnant mothers and children the resources to raise children who are healthy physically, mentally, and socially. These programs serve as a call to action by including at‐home visits as part of practices and institution services for patient populations facing difficulties in accessing traditional health care centers.

If the patient has access to the Internet, visits over the phone or Zoom could be an effective alternative to at‐home visits. Telehealth is vital for pediatric care, offering checkups and follow‐ups, especially for assessing and treating chronic conditions like CHD. ⁹⁷ By improving access to health care for pediatric patients that geographic barriers would otherwise limit, telehealth becomes a valuable resource in eliminating disparities. It can additionally increase access to subspecialty care, like pediatric cardiology, as it is regionally inadequate. ⁹⁸ It is now considered a medically necessary service under Medicaid's Early and Periodic Screening, Diagnostic, and Treatment Law. ⁸⁴ While it may initially seem that telehealth may generate more inequities through families lacking access to the Internet, efforts can be made to provide telemedicine education/training about free or reduced‐cost Internet.

Changes From a Provider's Perspective

So far, many of the interventions mentioned above include organizational efforts and solutions, which often require significant time to implement. Still, it is crucial to explore how physicians and health care professionals can mitigate these disparities and improve patient outcomes. Physicians and health care professionals can uniquely impact change at an individual level. The first step for physicians is to recognize and understand the underserved communities. This recognition can pave the way for active participation in programs such as Maternal, Infant, and Early Childhood Home Visiting and advocacy for policy changes, like free/low‐cost/“sliding scale” clinics, within their respective institutions. These programs can serve as potential avenues for addressing health care disparities. ⁹⁹ Providers can also advocate for robust metrics and transparency regarding outcomes at the population and community level. This transparency creates accountability within the health care system, driving continuous improvement and ensuring that providers deliver meaningful care to their patients. By lending their voice to the underserved and underrepresented, health care professionals empower those who may not have the means to advocate for themselves.

Additionally, implementing the Cultivate, Optimize, Reinforce, and Enhance strategies within clinical practice or going through implicit bias training helps physicians and health care professionals reduce potential biases and promote inclusivity. ⁸⁴ Incorporating value‐based health care principles into their practices can contribute to equitable change at the regional level. ¹⁰⁰ , ¹⁰¹ Hospitals and institutions can provide physicians with education on available resources such as the module course “The Health Disparities Education: Beyond Cultural Competency Precourse” or “Train the Trainer Guide, Health Disparities Education,” which are well‐acclaimed courses. ¹⁰² These individual‐level actions, which physicians can efficiently and effectively implement, are strong avenues that can contribute to the overarching goal of health equity and prevent vulnerable patients from falling through the cracks.

Intersectionality and Overlapping Disparities

In analyzing health care disparities within pediatric CHD, it becomes evident that multiple population groups face compounded disadvantages. Intersectionality refers to the interconnected nature of social categorizations including race, ethnicity, socioeconomic status, and geographic location, which can create unique situations and disparities in health care access, outcomes, and overall health. For example, racial and ethnic minority groups already face barriers to accessing quality health care, which is compounded by socioeconomic factors such as income level, education attainment, or uninsured categories. Racial and ethnic minorities from low‐income households may encounter barriers to accessing cardiac specialized care or experience disparities in treatment outcomes compared with their counterparts from higher‐income backgrounds. The stress of having children with chronic disease is also harder on families, and these families can tend to have single‐parent homes, which further compounds economic, medical, and social burdens simultaneously. ¹⁰³

Similarly, the aforementioned marginalized groups often live within geographic “medical deserts.” This term has been used more recently to describe a medically underserved area. Brinzac et al provide a comprehensive definition of medical deserts and how residing in these deserts can lead to higher morbidity and mortality rates. ¹⁰⁴ Factors such as race, ethnicity, low‐ and middle‐income households, limited education, health literacy, and lack of insurance can coalesce within the same population. These intersecting disparities are mirrored in interventions, as many apply to multiple groups, again highlighting the interconnection of health care disparities. These intertwined and compounded effects underscore the existence of systemic barriers and inequities within the health care system. Therefore, it is crucial for health care providers first to understand the multifaceted backgrounds and experiences of each patient, enabling tailored interventions that account for the unique circumstances of every individual.

Conclusions

This article has highlighted the critical distinctions between disparity, inequality, and inequity and the importance of precise language in health care disparity discussion. Identifying the disparity along with the inequities allows for a more in‐depth view of consequential gaps. Recognizing disparities is the initial step in identifying the underlying inequities that fuel them. Addressing the health care disparity themes requires a multifaceted approach that encompasses a combination of hard and soft interventions and a call to action. It is also important to clarify that imperfections in CHD care cannot be attributed to medical providers or individuals. Rather, these disparities are predominantly driven by systemic factors within the health care system itself. Unfortunately, health care inequities can be inadvertently compounded, although they are truly working hard to advance health outcomes for all but may not have the correct frameworks in place. Nonetheless, increasing transparency of patient outcomes can help explore the shortcomings of our health system as it engages with patients. By recognizing the systemic nature of these health care disparities, we can focus efforts on implementing structural changes and addressing underlying issues to provide a more equitable medical care system that serves optimal health outcomes for all individuals, regardless of their background.

Disclosures

None.