Racial disparities in clinic follow‐up early in life among survivors of congenital heart disease

Abstract

Objective The current study aims to identify the rates of lapses in care and loss to follow‐up before age one through age five for white and nonwhite congenital heart disease (CHD) survivors. Nonwhite CHD survivors were hypothesized to experience an earlier lapse in care and be lost to follow‐up than whites. Design Patients were from a large pediatric hospital and had (1) at least one outpatient cardiology clinic visit or cardiac surgery visit before the age of one and (2) a diagnosis of moderate or complex structural CHD. Cardiology outpatient utilization rates were tracked from before age one through age five. Lapse in follow‐up was defined as not having at least one outpatient cardiology visit per year, and loss to follow‐up was not returning after a lapse in care by age five. Race was categorized as white and nonwhite. Covariates included sex, insurance type, noncardiology inpatient and outpatient hospital utilization, and CHD severity. Results The sample included 1034 patients. Overall, 75.7% experienced a lapse in care with only 41.6% of those returning by age five. Nonwhites experienced lapses in care at younger ages than whites. Nonwhites had a 53% increased risk of lapse in care. Medicaid patients and those with moderate CHD diagnoses also had an increased risk for lapse in care. Conclusions Lapse in care appears prevalent among CHD survivors by age five, with nonwhites demonstrating elevated risk. Future multisite prospective studies should include the assessment of parental knowledge, barriers to accessing care, and satisfaction with care.

Implicit Bias and Caring for Diverse Populations: Pediatric Trainee Attitudes and Gaps in Training

“…1 Racial disparities in pediatric care have been found across the spectrum of subspecialities. [2][3][4][5][6][7][8][9][10][11][12][13] Pediatric disparities in care and evidence of clinician bias have been examined related to socioeconomic status, 14 language, 15 sexual orientation, 16 gender identity, 17 and weight. 18 The underlying causes of these disparities in care are often multifactorial, including structural, institutional, and individual factors.…”

US Mortality Due To Congenital Heart Disease Across the Lifespan from 1999-2017 Exposes Persistent Racial/Ethnic Disparities

“…One study showed that minorities with CHD have an elevated risk of lapse in care in outpatient clinical follow up. 45 Other studies have shown that many of the racial/ethnic differences in mortality were in the outpatient setting. One statewide study noted that racial/ethnic differences in mortality were most notably observed during the postneonatal period and early childhood.…”

The global unmet need of congenital cardiac care: a quantitative analysis of the global burden of disease

“…This is also reflected by the high total excess morbidity and mortality in the United States, where, in addition to a large overall population, substantial barriers to care and socioeconomic and racial disparities exist in the care for children with CHD. [15][16][17] In addition, Afghanistan, India, Indonesia, Nigeria, Pakistan, the Philippines, and Sudan represent low-or lower-middle-income countries, where access to cardiac surgical services or any other specialty care (e.g., paediatric cardiology) is seriously limited. 8 Furthermore, substantial disparities have been reported within larger countries such as Brazil, China, and Mexico, limiting access to care due to geographical barriers (e.g., rural populations), financial barriers (e.g., lack of comprehensive health insurance), and infrastructural and workforce maldistribution.…”