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Capture rate of congenital heart defects in the Pediatric Health Information System database
Christina M Fink1, Clifford L Cua1, Deipanjan Nandi1
1The Heart Center, Nationwide Children's Hospital, Columbus, Ohio, USA.
Insights
The Pediatric Health Information System (PHIS) database captures just over half of congenital heart defects (CHD). Capture rates vary by defect severity, with critical CHD having higher identification in this large pediatric database.
Area of Science:
- Pediatric Health Services Research
- Cardiovascular Epidemiology
Background:
- Congenital heart defects (CHD) are common pediatric conditions frequently studied using large administrative datasets.
- The Pediatric Health Information System (PHIS) database is a valuable resource for researching pediatric inpatient encounters.
- The accuracy of CHD ascertainment within the PHIS database has not been previously established.
Purpose of the Study:
- To determine the capture rate of congenital heart defects (CHD) within the Pediatric Health Information System (PHIS) database.
- To evaluate the PHIS database's utility for research on pediatric cardiovascular conditions.
Main Methods:
- Utilized inpatient encounter data from the PHIS database (2010-2014) for patients under one year of age with cardiac defects.
- Compared PHIS data with national prevalence estimates from the National Birth Defects Prevention Network (NBDPN) as the gold standard.
Main Results:
- The overall capture rate for CHD in the PHIS database ranged from 30% to 95%, varying by defect severity and heterogeneity.
- Critical CHD (CCHD) demonstrated a higher capture rate of 66%.
- Specific severe defects like interrupted aortic arch and hypoplastic left heart syndrome had capture rates of 70% or greater.
Conclusions:
- The PHIS database identifies approximately half of all predicted congenital heart defect cases.
- While effective for detecting CHD requiring early hospitalization, the database has limitations for less severe or more varied defect presentations.
- Researchers should consider these capture rate variations when designing studies using the PHIS database for CHD research.
Introduction:
Congenital heart defects (CHD) are common and are a frequent subject of research using large administrative databases such as the Pediatric Health Information System (PHIS) database. The capture rate of CHD within PHIS, however, has not been described.
Methods:
The PHIS database includes inpatient encounters from over 52 tertiary care pediatric hospitals across the United States. We identified all patients less than 1 year of age with a cardiac defect in PHIS from 2010 to 2014 and compared these results with national prevalence estimates based on the National Birth Defects Prevention Network annual report, which served as the gold standard.
Results:
The capture rate of CHD in PHIS ranged from 30 to 95% depending on the spectrum of severity and heterogeneity of the cardiac defect. The capture rate was higher for critical CHD (CCHD) at 66%, and all lesions with 70% or greater capture rate (interrupted aortic arch, truncus arteriosus, single ventricle, total anomalous pulmonary venous return, double outlet right ventricle, and hypoplastic left heart syndrome) fell within the CCHD category.
Conclusions:
Just over half of the predicted CHD patients were identified using the PHIS database. Although there is a high capture rate for CHD that require early hospitalization, there is a low capture rate for defects with a wider spectrum of disease presentation. These attributes of the PHIS database should be used to frame previous and future research using PHIS to study CHD.
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