1

Background

Pediatric cardiomyopathies are rare, with an annual incidence of 1.1 to 1.5 per 100,000. In the Pediatric Cardiomyopathy Registry, dilated cardiomyopathy (DCM) was the most common phenotype, with a yearly incidence of 0.57 per 100,000 children. The incidence was higher in Blacks than in Whites (0.98–1.05 vs 0.33–0.46 per 100,000/yr; P < 0.001) [ ].

Data from the registry show that within 2 years of presentation, normalization of left ventricular function occurs in 20 % of DCM children, while 40 % die or undergo transplantation [ ]. This implies that as much as 40 % continue with the burden of chronic heart failure. Many factors, including socioeconomic status, influence an individual’s ability to obtain the best health care. Disparities occur across several factors, including race, ethnicity, age, socioeconomic status, living conditions, neighborhood, language, gender, disability, sexual identity, immigration, and citizenship status. Survival and other outcome measures are also worse in Blacks, a result of a complex interplay of race and socioeconomic factors [ ]. This review is a follow-up to the presentation on this topic at the 6th International Conference on Cardiomyopathy in Children, jointly sponsored by The Children’s Cardiomyopathy Foundation, the Cardio-Oncology Program at Cincinnati Children’s and the Pediatric Cardiomyopathy Registry, held i n May 2024.

The objectives of this manuscript are to:

• a)
  

  Review available evidence of the impact of SDOH on outcomes of pediatric DCM.

  
  
• b)
  

  Discuss mitigating strategies for improving the care and outcomes of DCM in the children affected by the negative effects of SDOH.

  
  
• c)
  

  Discuss how we can incorporate some of these strategies in our daily pediatric practice as advocates for children with DCM who struggle with SDOH.

2

Discussion

Health is not only driven by the quality of medical care but also by other factors such as the person’s neighborhood, job, economic status, level of education, access to healthy foods, access to reliable transportation, and many other factors collectively referred to as SDOH. The negative aspects of SDOH, also termed Social Risk Factors, include poverty, unequal access to health care, lack of education, stigma, and racism [ ]. Social risk factors contribute to health inequities that increase morbidity and mortality. Studies have shown that people from lower socioeconomic backgrounds, rural populations, and communities of color experience a higher burden of poor health relative to those from higher socioeconomic backgrounds, urban populations, and Caucasians [ ].

While the US spends the most money on health care, the US has some of the poorest health outcomes among all developed countries. Regardless of the era, ‘the health inequity gap’ in the US has grown yearly. It describes the unfair and systematic differences in health status and access to health resources between different groups of people in the US. People from racial/ethnic minority groups, rural areas, and low-income areas continue to experience suboptimal access to and quality of health care despite decades of recognition of health disparities and policy mandates to eliminate these disparities. It has been suggested that many healthcare interventions designed to achieve health equity fall short because of gaps in knowledge and translation [ ].

Some factors termed “Upstream factors” affect communities in a broad and inequitable way that prevents good health outcomes. These include low educational status and opportunity, income disparity, discrimination, and social marginalization [ ].

Racially disparate health outcomes have been described for several populations and several disease states. It is disappointing that advancements in medical care have not translated into better outcomes for certain races and ethnicities. Study after study has shown that racial disparities in the timing of diagnosis, lapses in medical care, under-utilization of preventive care, lack of quality care, and increased mortality persist in people from low socioeconomic backgrounds, especially among Blacks and Hispanics. [ , ] It can be inferred from these studies that identifying and addressing racial disparities in access to quality education and quality healthcare may improve the survival and overall health of minoritized children with DCM.

Cardiomyopathy is the most common indication for heart transplantation in children, ranging from 41 % in infants to 65 % in patients between 11 and 17 years of age. Of all the cardiomyopathies, DCM is the most prevalent [ , ]. Greenberg et al. examined data from 8845 children listed for heart transplantation between 2006 and 2021 and found that non-White children were significantly more likely to have public insurance than White children and that CMP diagnosis was more common among non-White children. Ventricular assist device (VAD) utilization rate at the time of transplant was also greater among Blacks than Whites. While the early benefits of VAD therapy were universal across all races and ethnic groups, discrepancies existed in long-term survival [ ]. In another study, Amdani et al. analyzed UNOS/Scientific Registry data and showed that waitlist mortality in African Americans was significantly higher than in Whites [ ]. Similarly, Singh TP et al. also found that compared to Caucasian children, the risk of waitlist mortality was increased by 60 % for African Americans, 50 % for Hispanics, 100 % for Asians, and 130 % for children of other races [ ]. Ntusi et al. reported that although DCM arises earlier in life, it is underrecognized among Black patients, who are less often referred for evidence-based therapies. Social determinants of health, systemic racism, and bias likely contribute to these disparities [ ].

Singular measures of socioeconomic status have been studied in pediatric heart disease, including congenital heart disease, heart surgery, and heart failure. Singular measures do not take into account the converging influences of the broader community and social contexts, such as housing, education, nutrition, and environmental exposures. In order to improve the health and well-being of children, the health sector must move beyond just focusing on treating diseases after they have occurred and focus more on improving neighborhood conditions [ ].

Neighborhoods do influence the health of children with heart disease, so it is important to have measures of children’s neighborhood and environment. One such measure is the Child Opportunity Index (COI). It specifically evaluates neighborhood resources and conditions that promote healthy childhood development. In its third iteration, the COI 3.0 is a composite metric of 44 neighborhood indicators across three domains (education, health & environment, and socioeconomic status) – conditions children experience across the US. Evidence shows racial and ethnic inequities exist in differing neighborhoods in the 100 largest metropolitan areas in the US. For example, COI scores range from 20 in Fresno, California, to 83 in Madison, Wisconsin. Nationally, the COI score for White children (COI score = 73) is much higher than for Black (COI score = 24) and Hispanic (COI score = 33) children [ ]. COI has also been used as a research tool to identify disparities in both cardiac and non-cardiac pediatric health outcomes. Amdani et al. reported an increased burden of deaths due to HF among Hispanic children, even after adjusting for clinical acuity and the need for hemodynamic support, suggesting that there may be socioeconomic factors and barriers to care that account for these differences [ ].

Some experts have suggested using the phrase ‘Social Drivers of Health’ rather than ‘Social Determinants of Health.’ They argue that “determinants” suggest nothing can be done to change the fate of the individual’s health. By saying social factors drive a person’s health, we reframe the conversation about health by saying that people and communities can overcome or change these negative social drivers [ ].

The impact of race and ethnicity on hospital mortality has been well described. Using the Kids’ Inpatient Database, Olsen, et al. analyzed 34,617 hospital admissions of children with cardiomyopathy and myocarditis. They examined the impact of race and ethnicity on hospital mortality using variables such as age, calendar year, sex, insurance type, diagnosis, treatment hospital, and non-cardiac organ dysfunction. They found that African-American race and Hispanic ethnicity were independent risk factors for mortality, with an odds ratio of 1.25 and 1.29, respectively, compared to Caucasians. In addition, African American race was significantly associated with a higher incidence of the use of ECMO, mortality while on ECMO, and cardiac arrest [ ].

The issue of disparity is not just specific to children with DCM or heart disease alone but spans the entire list of pediatric subspecialties. Slopen et al. performed an extensive literature review on “racial and ethnic inequities in pediatric healthcare delivery in the US. They reviewed studies published between 2017 and 2022 and found that “overall, the literature revealed widespread patterns of inequitable treatment across pediatric specialties, including neonatology, primary care, emergency medicine, inpatient and critical care, surgery, developmental disabilities, mental health care, endocrinology, and palliative care.” They found that children from minoritized racial and ethnic groups received poorer healthcare services relative to non-Hispanic White children [ ].

There is a considerable toll on the physical and emotional health of minority children with heart disease. Using caregiver-reported data from a US National Survey of Children’s Health from 2016 to 2019, Judge et al. performed a population-based survey of the physical and emotional health of US children under 18 years old with heart disease. Hispanics and Blacks, compared with non-Hispanic Whites, were more likely to have no caregiver employment or caregivers with a high school education or less. Differences by race/ethnicity among children with heart conditions were also seen for insurance type, with Blacks and non-Hispanic Whites more likely to have public insurance and not have a usual place of care [ ].

The cost of treating a child with acute heart failure in the US is enormous. Compared with adults, children with CMP hospitalized with heart failure used advanced heart failure therapies more frequently. In a large population-based study of admissions for new-onset heart failure in children with CMP, 54 % received intravenous inotropic support, 41 % were placed on mechanical ventilation, 13 % were treated with extracorporeal membrane oxygenation, and 11 % underwent urgent transplantation [ ].

Practice guidelines, consensus statements, and scientific publications on DCM do not adequately address the role of racial and ethnic disparities in DCM, which highlights this urgent need [ ].

CRediT authorship contribution statement

Alfred Asante-Korang: Writing – review & editing, Writing – original draft, Supervision, Resources, Project administration, Methodology, Formal analysis, Conceptualization.