The Association of Race and Ethnicity with Mortality in Pediatric Patients with Congenital Heart Disease: a Systematic Review

Sooy-Mossey, Meredith; Ezekian, Jordan E; Williams, Jason A.; Lee, Grace S.; Wood, Kathleen; Dizon, Samantha; Kaplan, Samantha; Li, Jennifer S.; Parente, Victoria

doi:10.1007/s40615-023-01687-2

Cited by 2 publications

(1 citation statement)

References 70 publications

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“…Risk models for postoperative outcomes often fail to account for sociodemographic factors, which may be just as important in determining survival and quality of life. Children of racial/ethnic minorities are consistently found to have increased mortality, with non-Hispanic (NH) Black children experiencing the greatest risk of mortality [30]. Similarly, another study reported an increased relative risk (RR) of death among NH Blacks and Hispanics compared to NH Whites, even after adjusting for access to care [31].…”

Section: Infancy and Early Childhoodmentioning

confidence: 99%

Effects of Sociodemographic Factors on Access to and Outcomes in Congenital Heart Disease in the United States

Robinson,

Sahai,

Pennacchio

et al. 2024

JCDD

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Congenital heart defects (CHDs) are complex conditions affecting the heart and/or great vessels that are present at birth. These defects occur in approximately 9 in every 1000 live births. From diagnosis to intervention, care has dramatically improved over the last several decades. Patients with CHDs are now living well into adulthood. However, there are factors that have been associated with poor outcomes across the lifespan of these patients. These factors include sociodemographic and socioeconomic positions. This commentary examined the disparities and solutions within the evolution of CHD care in the United States.

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Section: Infancy and Early Childhoodmentioning

confidence: 99%

Effects of Sociodemographic Factors on Access to and Outcomes in Congenital Heart Disease in the United States

Robinson,

Sahai,

Pennacchio

et al. 2024

JCDD

View full text Add to dashboard Cite

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Parent and healthcare professional experiences of critical congenital heart disease in New Zealand to advance health equity

Watkins,

Ward,

Brown

et al. 2024

BMC Health Serv Res

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Background Higher odds of survival have been reported in European infants compared to Indigenous Māori and Pasifika infants with critical congenital heart disease in New Zealand. We therefore aimed to understand how to mitigate this disparity by investigating the parent and healthcare professional experiences’ of critical congenital heart disease healthcare in New Zealand. Methods A prospective qualitative study utilising semi-structured interviews was conducted on a cohort of purposefully sampled parents and health professionals with experience of critical congenital heart disease healthcare in New Zealand. Parents were recruited after a fetal critical congenital heart disease diagnosis and offered two interviews at least three months apart, whilst multidisciplinary fetal and cardiosurgical health professionals were interviewed once. Interviews were recorded and transcribed verbatim before coding, categorization and qualitative analysis. Results During 2022 and 2023, 45 people participated in 57 interviews (25 parents: 19 mothers, 6 fathers; Indigenous Māori, n = 5; Pasifika, n = 6; Asian, n = 4; European, n = 10; and 20 healthcare professionals: European n = 17). The three lessons learned from participants were: (1) Minoritized groups experience disparate healthcare quality; (2) healthcare systems are under-resourced to provide equitable support for the differential needs of grieving parents; and (3) healthcare systems could engage minoritized families more optimally in shared decision-making. Conclusions According to the experiences of parents and healthcare professionals, persisting inequities in CCHD healthcare quality occur by ethnic group, with the New Zealand healthcare system privileging European families. The concepts from this study could be translated by healthcare leaders, policymakers, and professionals into evidence-based healthcare system improvements to enhance experiences for non-European families more broadly.

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The Association of Race and Ethnicity with Mortality in Pediatric Patients with Congenital Heart Disease: a Systematic Review

Cited by 2 publications

References 70 publications

Effects of Sociodemographic Factors on Access to and Outcomes in Congenital Heart Disease in the United States

Effects of Sociodemographic Factors on Access to and Outcomes in Congenital Heart Disease in the United States

Parent and healthcare professional experiences of critical congenital heart disease in New Zealand to advance health equity

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