It is with great interest that we read the letter by Dummula and Pandey [2] regarding the recent article entitled "False-Negative Pulse Oximetry Screening for Critical Congenital Heart Disease: The Case for Parent Education" [1]. Although much attention has been focused on children with a positive result (i.e., those who fail screening), little is known regarding children with a negative result (i.e., those who pass screening), particularly those with a false-negative result.However, we wish to comment on a potential misconception regarding screening. In their letter, Dummula and Pandey urge the American Academy of Pediatrics "to mandate that nurseries document the cardiac conditions specifically ruled out by virtue of a negative screen on every discharge summary." They suggest that pulse oximetry screening for critical congenital heart disease (CCHD) should be used to rule out the possibility of a child having certain types of CCHD due to the high specificity of the test.Indeed, the specificity of pulse oximetry screening for CCHD is high at 99.9 % [95 % confidence interval (CI) 99.7-99.9 %]. However, the sensitivity, which is the more relevant measure for ruling out disease, is only 76.5 % (95 % CI 67.7-83.5 %) [4]. With this level of sensitivity, some cases of CCHD in newborns will still be missed before they are discharged
BACKGROUND: Population-based information on special education service needs among children with congenital heart defects (CHDs) is limited. We investigated the prevalence of receipt of special education services among children with CHDs. METHODS: Children born from 1982-2004 in metropolitan Atlanta with CHDs (n=3,744) were identified from a population-based birth defect surveillance program, and contemporaneous children born without major birth defects (n=860,715) were identified from birth certificates. Cohorts were linked to special education files for 1992-2012 school years to identify receipt of special education services. Children with CHDs and non-cardiac defects or genetic syndromes were excluded; children with isolated CHDs were classified by presence or absence of critical CHDs (i.e., defects needing intervention in the first year of life). We evaluated prevalence of special education services and calculated prevalence ratios (PRs) using children without birth defects as reference. RESULTS: Children with CHDs were 50% more likely than those without birth defects to use special education services (PR 1.5; 95% Confidence interval 1.4-1.7). Similar to children without birth defects, the most common eligibility among children with CHDs was speech/language impairment. Compared to children without birth defects, the prevalence of several special education eligibilities were significantly higher among children with all CHDs: any intellectual disability (PR 3.8), sensory impairment (PR 3.0), other health impairment (PR 2.8), significant developmental delay (PR 1.9), orthopedic impairment (PR 1.9), and specific learning disability (PR 1.4). For most special education eligibilities, there was no significant variation in the elevated prevalence ratios by presence or absence of critical CHDs. CONCLUSIONS: Children with many types of CHDs received special education services more often than children without birth defects. These findings highlight important resource needs for children with CHDs. Furthermore, they suggest that recommendations to perform developmental screening only on children with select CHDs may miss or delay identification of children with other CHDs, who may also need special education services.
Introduction: Pulse oximetry screening for critical congenital heart disease (CCHD: hypoplastic left heart syndrome, transposition of the great arteries, tricuspid atresia, truncus arteriosus, tetralogy of Fallot, total anomalous pulmonary venous return, and pulmonary atresia) was added to the Recommended Uniform Screening Panel for newborns in 2011. However, population-based data on trends in survival and prognostic factors for infants with CCHD are limited. Methods: We performed a retrospective cohort study of infants born with structural congenital heart disease (CHD) between 1979 and 2005 and identified through the Metropolitan Atlanta Congenital Defects Program. Survival was determined via linkage with state vital records and the National Death Index. We estimated Kaplan-Meier survival probabilities for CCHD by birth era and timing of diagnosis, and we used proportional hazards models to assess several prognostic factors, including birth era, timing of diagnosis, maternal age, birth weight, race/ethnicity, sex, socioeconomic status, and presence of non-cardiac defects. Results: Overall 1-year survival was 65.2% for those with CCHD (n=1204) vs. 89.9% for those with other forms of CHD (n=5761; p<0.0001). One-year survival for CCHD improved from 56.5% for the 1979-1986 birth era to 75.1% for the 2000-2005 era (p<0.0001). For infants with CCHD but without non-cardiac defects (n=864), overall 1-year survival was 68.4% for those diagnosed at ≤1 day of age (n=673) vs. 75.9% for those diagnosed at ≤1 day of age (n=191; p=0.04). There was a higher risk of mortality for infants with earlier birth era, earlier diagnosis, maternal age <30, low birth weight, and presence of non-cardiac defects (Table). Conclusions: One-year survival for infants with CCHD has been improving over time, yet mortality remains high. Identification of prognostic factors for CCHD may aid future evaluations of the impact of pulse oximetry screening on survival from CCHD.
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