Is Race Associated With Morbidity and Mortality After

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Pediatr Cardiol DOI 10.1007/s00246-012-0475-5

ORIGINAL ARTICLE

Is Race Associated With Morbidity and Mortality After Hospital Discharge Among Neonates Undergoing Heart Surgery? Javier J. Lasa • Meryl S. Cohen • Gil Wernovsky Nelangi M. Pinto



Received: 7 April 2012 / Accepted: 24 July 2012 Ó Springer Science+Business Media, LLC 2012

Abstract This study aimed to characterize the impact of race on morbidity and mortality after hospital discharge from neonatal congenital heart surgery. A retrospective chart review examined all the neonates who underwent neonatal heart surgery from January 2005 to June 2006 at The Children’s Hospital of Philadelphia. After risk adjustment for the type of surgery using the Risk Adjustment for Congenital Heart Surgery 1 (RACHS-1) method, the association of race with mortality after hospital discharge was assessed using Fisher’s exact test for statistical analysis. A cross-sectional telephone survey of surviving patients also was conducted to examine the association of race and social factors with adverse events (admissions or reinterventions). Mortality status was known for 201 of the 217 patients screened. The mortality rate after discharge was 8 %, with a higher mortality rate for nonwhite patients (14 %) than for white patients (4 %) (p = 0.01). After risk adjustment, this effect was limited to nonwhite patients with less complex heart disease (RACHS-1 categories 1–3; 17 vs 2 %, respectively; p = 0.01). The survey completion rate was 54 %. In this cohort, race also was independently associated with adverse events among patients with less complex heart disease (RACHS-1 categories 1–3; nonwhites 53 % vs whites 25 %; p = 0.046). Among the patients with less complex heart disease, the nonwhite

J. J. Lasa (&)  M. S. Cohen  G. Wernovsky  N. M. Pinto Division of Cardiology, The Children’s Hospital of Philadelphia, 8NW-37, Main Building, 34th Street and Civic Center Boulevard, Philadelphia, PA 19104, USA e-mail: [email protected] J. J. Lasa  M. S. Cohen  G. Wernovsky  N. M. Pinto School of Medicine, University of Pennsylvania, Philadelphia, PA, USA

patients had a significantly higher risk of morbidity and mortality after hospital discharge than the white patients. Keywords Cardiac surgery  Congenital heart disease  Mortality  Race

The elimination of racial and ethnic disparities in health care was established as a primary goal of the U.S. government-sponsored Healthy People 2010 initiative in November 2000 [30]. Disparities in outcomes based on race have been well documented in a number of publications from the U.S. Department of Health and Human Services (DHHS), the Institute of Medicine, and the Kaiser Family Foundation. Moreover, reports of continuing racial and ethnic disparities appear regularly in pediatric and adult journals [1, 7–9, 17, 18, 22, 26, 29]. Approximately 1 % of newborns are born with congenital heart disease (CHD), with approximately 11,000 children per year in the United States requiring open heart surgery in early infancy [15, 16]. Although the overall mortality risk for infants with CHD has declined over the past two decades, racial disparities in mortality rates still exist [4, 24, 25]. Previous studies evaluating the impact of race on early mortality after neonatal heart surgery have demonstrated higher in-hospital mortality rates for nonwhite patients than for white patients [3, 13]. However, few studies have looked beyond the initial hospital stay [6]. The initial year after surgery is a vulnerable period for children with complex CHD who have required neonatal heart surgery. Previous reports suggest that mortality rates range from 2 to 11 % in the first 12 months after discharge subsequent to neonatal heart surgery, with higher mortality rates for neonates who have a functional single ventricle [6, 14]. We

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sought to determine whether race is associated with morbidity and mortality after hospital discharge in neonates who have undergone neonatal heart surgery. We hypothesized that rates of adverse events and mortality would be disparate between racial groups after discharge from initial neonatal heart surgery.

Methods A retrospective cohort study assessed the impact of race on mortality and adverse events after hospital discharge. Patients undergoing heart surgery at our institution between 1 January 2005 and 30 June 2006 who were younger than 30 days of age (neonates) at the time of surgery were included for analysis. Patients were excluded from the analysis if they had inoperable heart disease, had died prior to discharge, or had undergone minor surgical procedures (e.g., isolated patent ductus arteriosus ligation or vascular ring repair). Between 1 August 2006 and 4 January 2008, follow-up information was obtained for all the study subjects. Phase 1 consisted of a retrospective chart review to collect data on peri- and postoperative variables from the index hospitalization as well as the current status of patients primarily followed at our institution. For patients not primarily followed at our institution, the primary cardiologist was contacted to obtain current status. Phase 2 involved a cross-sectional telephone survey evaluating families of children known to be living. Families of patients known to have died after hospital discharge were not contacted for the survey. The survey questions were designed for this study with a focus on quantifying postdischarge readmissions, reinterventions, medical comorbidities, and social/family structure within the household. Surveys were conducted with a consenting parent or primary caregiver. The study population was divided into racial groups designated as white and nonwhite. Self-identified black and Hispanic patients, together with ‘‘other’’ patients were grouped to form the nonwhite category. In addition, as an adjustment for baseline differences in patient risk, all the patients were stratified according to the risk adjustment for congenital heart surgery 1 (RACHS-1) method [19, 20, 27]. Additional variables included in the RACHS-1 were age group (B30, 31–1 year, or C1 year), prematurity, a major noncardiac structural anomaly, and combinations of cardiac procedures, which were placed in the category corresponding to the highest risk procedure. The follow-up period began on the day of discharge and ended with either death or the end of the study period. The primary outcomes included mortality and morbidity after hospital discharge. The mortality status of patients admitted

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to our institution’s cardiac intensive care unit was confirmed via a review of clinical charts and a clinical database. For patients subsequently followed by outside institutions or private practices, mortality status was confirmed by verbal communication with the primary provider. Morbidity and any ‘‘adverse event,’’ defined as either any unplanned hospital admission or unplanned cardiac reintervention (i.e., catheterization or surgery), was evaluated by telephone survey. Adverse events that occurred at The Children’s Hospital of Philadelphia were confirmed by chart review. All remaining adverse events occurring at outside institutions were confirmed by the patient’s family self-report alone. Additional data obtained via the survey included the current use of cardiac medications, the current use of a home monitor (heart rate or pulse oximeter), the current use of home oxygen therapy, and the presence of seizures or developmental delay reported at the time of the survey. Finally, the telephone survey also inquired about social factors in the home such as annual household income, education level of primary caregivers, and primary language spoken in the home. Our hospital’s Institutional Review Board approved the study, and telephone consent was obtained at the time of the survey. The analysis was conducted using Stata 10.0 software (Stata Corp, College Station, TX, USA). Normally distributed continuous variables were expressed as mean and standard deviation, and non-normally distributed variables were described as median and range. Categorical and dichotomous variables were tabulated. Mortality and adverse events (the occurrence of an unplanned readmission or reintervention) were measured as dichotomous variables. Race also was treated as a dichotomous variable: white versus nonwhite. The association of race with mortality and adverse events was analyzed using Fisher’s exact test or a chi-square test if expected cell frequency requirements were met. A secondary analysis also was completed with stratification of anatomic risk group. Demographic, perioperative, postoperative, and clinical risk factors associated with mortality and adverse events were identified by univariate analysis. Factors significant in the univariate analysis (p \ 0.05) then were included in backward stepwise logistic regression models. Given their potential confounding based on causal inference, socioeconomic factors found to be associated with race were entered into the final models for morbidity. However, they could not be included in the regression models for mortality because these factors were assessed only at the time of the survey.

Results The study population was composed of 217 neonates with complex CHD who met the inclusion criteria. The

Pediatr Cardiol

characteristics of the initial cohort are summarized in Table 1. The cohort comprised a majority of self-identified ‘‘white’’ patients (65 %) as well as similar proportions of self-identified black patients (14 %) and Hispanic patients (15 %). The remainder were identified as ‘‘other’’ patients (7 %). Additionally, the cohort was composed of Risk Adjustment for Congenital Heart Surgery 1 (RACHS-1)

Table 1 Demographics and predischarge characteristics Characteristic

Cohort (n = 217) (%)

White (n = 137) (%)

Nonwhite (n = 75) (%)

p Value

Male

52.5

50.7

57.3

0.36

Race White (n = 136)

64.5

Nonwhite (n = 75)

34.6

Black (n = 29)

13.7

Hispanic (n = 32)

15.2

Other (n = 14)

6.6

Birth weight (kg)

3.1 ± 0.7

3.1 ± 0.7

2.9 ± 0.6

0.04

Gestational age (weeks)

37.9 ± 1.9

37.9 ± 2.1

38.1 ± 1.6

0.44

Genetic syndrome

16.1

12.5

21.3

0.09

Premature (\ 37 weeks)

16.2

16.4

12.5

0.48

Prenatal diagnosis

52.5

53.7

50.7

0.68

RACHS-1 2 (n = 29)

13.7

15.3

10.8

3 (n = 74)

35.1

29.9

44.6

4 (n = 36)

17.1

18.3

14.9

6 (n = 72)

34.1

36.5

29.7

0.20

5.9 ± 5.8

5.6 ± 5.5

6.4 ± 6.3

0.34

Weight at surgery (kg)

3.1 ± 0.7

3.2 ± 0.7

3.0 ± 0.6

0.26

Postoperative ECMO

1.8

1.5

2.7

0.54

Postoperative cardiac arrest

3.7

3.7

2.7

0.69

Age at surgery (days)

Postoperative seizure

2.4

0.7

5.3

0.04

Diaphragm plication

2.4

1.4

4.0

0.25

Delayed sternal closure

9.5

8.8

10.7

0.66

Length of intubation: days (range)

3 (0–35)

2 (0–63)

1 (1–28)

0.51

Length of hospitalization: days (range)

15 (3–352)

14 (4–67)

11 (3–352)

0.16

Discharge cardiac medications

82.0

80.9

84.0

0.57

Discharge oxygen

12.3

12.6

12.1

0.94

Discharge tube feeds

52.8

46.7

63.0

0.02

Discharge to outside hospital

21.7

15.6

30.7

0.01

Loss to follow-up

6.9

3.7

9.3

0.12

Survey completion

51.2

59.7

36.0

0.001

Poverty (income \ $20,000/ year)a

15.2

6.3

44.4

\0.001

\ High school diplomaa

24.8

15.9

51.9

\0.001

Married or living with partnera

93.4

95.1

88.0

0.214

a

Assessed only in the survey population (n = 109: 82 white and 27 nonwhite)

category 1 (0 %), category 2 (14 %), category 3 (35 %), category 4 (17 %), category 5 (0 %), and category 6 (34 %) patients. The mean follow-up period after hospital discharge from neonatal cardiac surgery was 23.9 ± 3.4 months. Comparison of the two study groups before surgery showed no significant differences in gestational age, genetic abnormalities, percentage of patients with a prenatal diagnosis, age at surgery, or complexity of CHD. However, the nonwhite patients had a significantly lower birth weight. The nonwhite patients also were more likely to be living in poverty and to have less than a high school education. After surgery, there were no differences in frequency of unplanned reoperations, mechanical circulatory support, discharge medications, home oxygen use, duration of mechanical ventilation, or hospital stay. However, nonwhite patients were significantly more likely to experience seizures after surgery, discharge with supplemental tube feedings, or transfer back to a referring institution. Mortality After the exclusion of 15 patients lost to follow-up evaluation, the overall mortality rate after hospital discharge for the cohort was 8.6 % (n = 16) (Fig. 1). The unadjusted mortality rate after hospital discharge was significantly associated with race (nonwhites 13.6 vs whites 3.8 %; p = 0.01; Fig. 2). After risk stratification, this effect of race was limited to less complex forms of CHD. Nonwhite patients with less severe forms of CHD (RACHS-1 categories 2 and 3) had a significantly higher mortality rate than white patients (nonwhites 17.1 vs for whites 1.7 %; p = 0.01; Fig. 2). No statistically significant difference in mortality was observed between racial groups with more severe forms of CHD (RACHS-1 categories 4 and 6). The additional risk factors found to be significantly associated with mortality after discharge are presented in Table 2. The results of multivariate modeling are presented in Table 3. Race remained an independent predictor of postdischarge mortality. Morbidity Among 186 eligible families of surviving children, 111 were reached for the survey (55 %). The survey rate of completion by caregivers was 54 % (n = 109, Fig. 1). Two families refused consent, citing time constraints. Lack of contact was primarily a result of disconnected or inaccurate telephone numbers without available forwarding information. Self-reported adverse events (hospital readmissions or cardiac reinterventions) after discharge were calculated for

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Pediatr Cardiol Fig. 1 Patient recruitment

Neonatal Survivors At Discharge n = 217

Mortality Data 15 Lost to follow-up Post-Discharge Deaths n = 16

* Remaining Cohort n = 186

Unable to be contacted n = 75

Morbidity Data

Fig. 2 Overall race and postdischarge mortality with additional combined Risk Adjustment for Congenital Heart Surgery 1 (RACHS1) classification analysis

families who completed the survey. Survey respondents differed from nonrespondents with regard to race and gender. A significantly higher proportion of white families from the eligible cohort (201 survivors) responded to the survey compared with nonwhite families (whites 62 vs

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Consent Refused n=2

Survey Cohort n = 109

*

5 Race unknown

nonwhites 41 %; p = 0.005). The survey respondents did not differ significantly with regard to other demographic and perioperative factors including their preoperative anatomic classification. Among those surveyed, 62 % (67 patients) had an adverse event. Of these, 45 % (49 patients) had an unplanned admission and 40 % (43 patients) had an unplanned cardiac reintervention. No statistically significant difference in the occurrence of an adverse event was observed between racial groups (nonwhites 70 vs whites 59 %; p = 0.25). However, when stratified by anatomic class and specific type of adverse event, a higher proportion of nonwhite patients classified as RACHS-1 category 2 or 3 underwent unplanned cardiac reinterventions than their white counterparts (nonwhites 53 vs whites 25 %; p = 0.046; Fig. 3). In the univariate analysis, additional perioperative risk factors associated with adverse events (unplanned admissions and cardiac reinterventions) paralleled previously published results from this cohort [27]. In the adjustment for these additional predictors in multivariate regression, race remained independently associated with unplanned cardiac reinterventions for RACHS-1 categories 2 and 3 (Table 3). Given the potential confounding of socioeconomic factors and the significant relationship of race with poverty and education status, these additional variables were included in the initial model but were not found to be statistically significant (Figs. 4, 5). No statistically significant differences were seen between racial groups with regard to secondary morbidities

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such as current use of cardiac medications or home oxygen, developmental delay, postdischarge stroke, or seizures (Table 4). Family annual income was not associated with adverse events because 50 % of households earning less than $20,000 per year experienced an adverse event compared with 44 % of households earning more than $20,000 per year (p = 0.33). Likewise, no differences were observed when adverse events were analyzed by caregiver education level. In families whose primary caregivers earned a high school diploma or lower, 60 % experienced an adverse event compared with 62 % of families whose caregivers had a higher education degree (p = 0.78). Primary household language did not demonstrate a significant effect on adverse event rates. An adverse event was experienced by 50 % of English-speaking households compared with 56 % of non–English-speaking households (p = 0.54). However, non–English-speaking families expressed greater dissatisfaction with access to care than English-speaking famli9es (53.9 % vs 19.8 %; p = 0.01). Additionally, no differences were seen with regard to socioeconomic factors in relation to cardiac reinterventions alone (data not shown). The parents of the children in both racial groups expressed high satisfaction with the care their child received as assessed during the survey (nonwhites 96 % vs whites 96 %; p = 0.99). However, a significantly lower proportion of parents of nonwhite children were satisfied with the overall access to care for their child’s cardiac condition (nonwhites 61.5 % vs whites 81 %; p = 0.04).

Discussion In our study, overall mortality after hospital discharge was approximately 8 % among neonates undergoing neonatal heart surgery, similar to previously published outcomes for this population [4, 6, 10, 11, 13, 14, 23–25]. However, significant disparities in outcomes after hospital discharge were observed between racial cohorts. Unadjusted mortality rates were higher for the nonwhite patients in the entire cohort. Specifically, nonwhite patients at lower risk based on surgical intervention (RACHS-1 categories 2 and 3) were found to have a higher risk of death after discharge than their white counterparts. Notably, this racial disparity was not observed for those categorized in the more complex RACHS-1 categories 4 to 6. Although nonwhite race has been related to increased hospital mortality for the most complex forms of CHD (RACHS-1 categories 4–6) [3], race appears to have no effect on out-of-hospital mortality in this group. Our report is the first to demonstrate poorer outcomes after discharge for nonwhite patients with less complex forms of CHD

(RACHS-1 categories 2 and 3). However, our analysis of adverse events for the survey cohort showed no significant differences between racial groups. Secondary analysis by individual RACHS-1 classification also failed to show significant differences between racial groups. There also was no difference with regard to other morbidities after discharge such as use of supplemental oxygen, use of cardiac medications, or occurrence of developmental delay, seizures, or stroke. In addition to finding racial disparities in mortality, our study found a higher level of dissatisfaction with access to care among nonwhite families than among their white counterparts. Several studies of the CHD population have demonstrated a higher in-hospital mortality risk for nonwhite patients undergoing neonatal heart surgery [3, 4, 13, 24, 25], yet few reports have described the impact of race on mortality after hospital discharge. In our study, the disparity in mortality rates after discharge was limited to lower RACHS-1 categories of CHD. Although an assessment of primary care and cardiology provider perceptions was beyond the scope this investigation, the possibility exists that patients with less severe forms of heart disease are perceived by their providers as requiring less follow-up care, possibly placing them at a higher risk for postdischarge mortality. Furthermore, any potential inequalities in access to care or in quality of care received may become more evident in comparison with patients who have complex CHD such as single-ventricle palliations, who generally are followed very closely by their primary cardiologist. These differences may add to the overall risk for adverse events or mortality in nonwhite patients with less severe forms of CHD. Inconsistency in the source and quality of care for nonwhites has been suggested in the literature, indicating that potential flaws in our safety net of primary care providers and primary cardiologists may be exaggerated for certain racial populations. In particular, Bach et al. [2] reported that physician visits for black patients were highly concentrated among a small subgroup of physicians less likely to be board certified. In addition, these patients more frequently reported obstacles in gaining access to highquality services. In evaluating race-associated disparities in outcomes after congenital heart surgery for neonates, potential confounding variables such as socioeconomic status must be considered. To address this concern, we analyzed selfreported annual income and education levels in the survey cohort. These socioeconomic variables, although associated with race, were not associated with adverse events in the multivariate regression analysis and thus were less likely to be confounding variables in our analysis. Additional hypotheses have been proposed to explain racial differences in outcomes including regional variations

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Pediatr Cardiol Table 2 Characteristics of survivors versus nonsurvivors after discharge Characteristic

Survivor (n = 185) n (%)

Nonsurvivor (n = 16) n (%)

Birth weight (kg)

3.1 ± 0.05

2.7 ± 0.17

Term

134 (93.1)

10 (6.9)

Premature

23 (82.1)

5 (17.9)

No

154 (93.3)

11 (6.7)

Yes

26 (83.9)

5 (16.1)

White

127 (96.0)

5 (3.9)

Nonwhite

56 (92.7)

9 (13.9)

Male

104 (51.2)

10 (71.4)

Prematuritya

0.08

Racea

0.01

Prenatal diagnosisa

0.17 0.73

No

98 (92.5)

Yes

82 (91.1)

8 (8.9)

Age at surgery (days)

5.7 ± 0.39

9 ± 1.93

Weight at surgery (kg)

3.1 ± 0.65

2.8 ± 0.67

Length of intubation: days (range)

3 (0–75)

9 (1–35)

Length of hospitalization: days (range)

8 (7.6)

15 (3–352)

21 (8–108)

0.02 0.05 \0.001 0.05 \0.01

Postoperative ECMO No

178 (92.7)

14 (7.3)

Yes

2 (50.0)

2 (50)

No

176 (93.1)

13 (6.9)

Yes

5 (57.1)

3 (42.9)

No

178 (93.2)

13 (6.8)

Yes

2 (40.0)

3 (60.0)

No

175 (91.6)

16 (8.4)

Yes

5 (100.0)

0 (0.0)

No

166 (93.3)

12 (6.7)

Yes

14 (77.8)

4 (22.2)

No

34 (100.0)

0 (0.0)

Yes

146 (90.1)

16 (9.9)

No

145 (94.8)

8 (5.2)

Yes

35 (81.4)

8 (18.6)

No

102 (96.2)

4 (3.6)

Yes

12 (85.7)

2 (14.3)

No

85 (92.5)

7 (7.5)

Yes

91 (91.0)

9 (9.0)

No

148 (80)

9 (5.7)

Yes

37 (84.1)

7 (15.9)

\0.01

Postoperative cardiac arrest

\0.01

Postoperative seizure

Diaphragm plication

0.50

Delayed sternal closure

0.02

Discharge medications

0.06

[1 Discharge medication

\0.01

Discharge oxygena

0.09

Discharge tube feedingsa

0.71

Discharge to outside hospital

0.05

ECMO, extracorporeal, membrane oxygenation Totals may be less than 201 due to missing data in that category

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0.10 0.06

Genetic syndromea

a

p Value

in access to care, differences in insurance carrier status, and a biological theory that explains outcomes as a result of genetic differences between racial groups. Several studies in both adult and pediatric populations seeking to explore the access to care hypothesis have identified strong associations between nonwhite race and poorer outcomes in the outpatient management of common diseases. In an analysis of the National Inpatient Sample, Keenan et al. [21] found a higher likelihood of prolonged hospitalization and a possible worse level of glycemic control in nonwhite children with diabetic ketoacidosis or diabetic coma than in white children. In light of the lower incidence of diabetes mellitus among blacks than among whites, the authors postulate that the results may be skewed by a proportion of children with poorly controlled diabetes who may receive care in a different setting than their white counterparts. In a similar study, Carr et al. [5] found a strong association between black or Hispanic race and higher hospital admission rates as well as mortality for asthma in New York City, even when control was used for income level. Carr et al. [5] suggested that differences in supply of health care resources may account for geographic variations in health services used and outcomes. In light of the equal distribution of Hispanics (15 %) and blacks (14 %) in our cohort and the increasing nonblack minority populations throughout the country, communication difficulties with primarily Spanish-speaking families would be an additional possible explanation for inequalities in follow-up care, potentially increasing the mortality risk after hospital discharge. Prior reports have shown that non–English-speaking patients are less likely to seek medical care or understand written prescription information or verbal physician instruction [12, 28]. Our study highlights this potential difficulty with access to care experienced by non-English speakers because a larger proportion of our non–Englishspeaking families expressed dissatisfaction with access to care compared with primarily English speakers. Although our study did not find primary language to be associated with adverse events, the statistical analysis was likely underpowered to assess this secondary outcome, thereby limiting our ability to determine any associations with mortality because primary language was assessed by the survey tool. Several limitations of this retrospective study should be noted. First, the analysis was limited to a single institution with its own unique referral pattern. This makes generalization of our results to other surgical centers or regions of the United States difficult. Second, given the small number of deaths, the results of our multivariate analysis for associated factors should be interpreted with some caution. In comparison, the adverse event rate was of sufficient quantity to allow for multivariate modeling.

Pediatr Cardiol Table 3 Multivariate regression analysis for Risk Adjustment for Congenital Heart Surgery 1 (RACHS-1) categories 1 to 3 OR

Standard error

95% CI

11.7

11.8

1.6–83.9

1.2

0.1

0.9–1.5

Mortality Race (nonwhite) Older age at surgery (per increased days) Unplanned cardiac reinterventions Race (nonwhite)

6.6

5.3

1.4–31.6

Older age at surgery (per increased days)

1.2

0.1

1.0–1.3

Poverty (income \ $20,000/year)

0.3

0.3

0.0–2.5

Education (\ high school diploma)

1.1

0.9

0.2–5.6

OR, odds ratio; CI, confidence interval

Fig. 4 Kaplan-Meier curves for mortality between whites and nonwhites (p \ 0.05)

Fig. 5 Kaplan-Meier curves for mortality between whites and nonwhites in terms of Risk Adjustment for Congenital Heart Surgery 1 (RACHS-1) categories 1 to 3 (p \ 0.05)

Fig. 3 Unplanned cardiac reinterventions in relation to race and severity of congenital heart disease

Third, our data were obtained from institutional chart reviews and family surveys. A large number of patients who underwent surgery at our institution subsequently returned to other provider networks, frequently out of state. Although some patients returned for further planned reinterventions (surgical and catheter based), contacting those who were not recently evaluated at our institution was a challenge that may have led to selection bias in the cohort who participated in the survey phase of the study. Furthermore, although a slightly higher percentage of

nonwhite patients were lost to follow-up evaluation, this was not statistically significant. However, this should nonetheless be considered as a possible limitation and bias against nonwhites. An additional limitation of this study was the recall bias of primary caregivers on survey questions related to adverse events and morbidities. Although adverse events were measured in terms of parent-reported readmissions and reinterventions, we were unable to collect detailed data such as length of hospital stay and intensity of care required. Because a higher percentage of whites responded to the survey than to nonwhites, a differential bias may be present.

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Pediatr Cardiol Table 4 Secondary morbidities Outcome

Whites (n = 81) (%)

Nonwhites (n = 27) (%)

P Value

Current cardiac medication

44.4

48.2

0.74

Current home oxygen use

1.2

7.4

0.09

Current home monitor Current tube feeds

4.9 6.2

11.1 14.8

0.26 0.16

Developmental delay

40.7

25.9

0.17

Stroke after hospital discharge

2.5

11.1

0.06

Seizures after hospital discharge

2.5

3.7

0.74

Finally, although debate exists in the literature with regard to the role that insurance carrier and socioeconomic status play in health care outcomes, this study explored a limited number of socioeconomic factors available for the surveyed cohort only for their potential confounding impact on outcomes after discharge and did not examine the role of insurance status.

Conclusions This study provides further evidence of racial disparities that exist within the CHD population. In addition to known effects on early mortality involving complex lesions, racial disparities continue to influence mortality after hospital discharge among neonates with less complex forms of CHD. Furthermore, race may possibly have an impact on access to cardiac care or at least on perceptions of access to care in families of nonwhite patients. Continued research is required for further delineation of the complex interaction of race, CHD, surgery, and care after hospital discharge, with the ultimate goal of alleviating racial differences in health care outcomes.

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