@Article{chd.12732,
AUTHOR = {Jamie L. Jackson, Jennifer Morack, Millie Harris, Jennifer DeSalvo, Curt J. Daniels, Deena J. Chisolm},
TITLE = {Racial disparities in clinic follow‐up early in life among survivors of congenital heart disease},
JOURNAL = {Structural and Congenital Heart Disease},
VOLUME = {14},
YEAR = {2019},
NUMBER = {2},
PAGES = {305--310},
URL = {http://www.techscience.com/schd/v14n2/38775},
ISSN = {3071-1738},
ABSTRACT = {<b>Objective:</b> 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.<br/>
<b>Design:</b> Patients were from a large pediatric hospital and had (1) at least one outpa‐
tient cardiology clinic visit or cardiac surgery visit before the age of one and (2) a di‐
agnosis 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 fol‐
low‐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 inpa‐
tient and outpatient hospital utilization, and CHD severity.<br/>
<b>Results:</b> 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 in‐
creased risk for lapse in care.<br/>
<b>Conclusions:</b> 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 satis‐
faction with care.},
DOI = {10.1111/chd.12732}
}