Databases for Congenital Heart Defect Public Health Studies Across the Lifespan

Riehle‐Colarusso, Tiffany; Bergersen, Lisa; Broberg, Craig S.; Cassell, Cynthia H.; Gray, Darryl T.; Grosse, Scott D.; Jacobs, Jeffrey P.; Jacobs, Marshall L.; Kirby, Russell S.; Kochilas, Lazaros; Krishnaswamy, Asha; Marelli, Arianne; Pasquali, Sara K.; Wood, Tyler; Oster, Matthew E.

doi:10.1161/jaha.116.004148

Cited by 26 publications

(15 citation statements)

References 57 publications

(104 reference statements)

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“…Similar methods have been widely used and accepted for studies of acquired HF 8, 24. We25 and others26 have reported the constraints of administrative data sets for detection and categorization of ACHD. Even so, ICD‐9 codes have been used to investigate CHD‐related births and mortality in the United States 27, 28.…”

Section: Discussionmentioning

confidence: 99%

Hospitalization Trends and Health Resource Use for Adult Congenital Heart Disease–Related Heart Failure

Burchill

Gao

Kovacs

et al. 2018

JAHA

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BackgroundThis study assessed trends in heart failure (HF) hospitalizations and health resource use in patients with adult congenital heart disease (ACHD).Methods and ResultsThe Nationwide Inpatient Sample was used to compare ACHD with non‐ACHD HF hospitalization and health resource trends. Health resource use was assessed using total hospital charges, hospital length of stay, and procedural burden. A total of 87 175±2676 ACHD‐related HF hospitalizations occurred between 1998 and 2011. During this time, ACHD HF hospitalizations increased 91% (4620±438–8809±740, P<0.0001) versus a 21% increase in non‐ACHD HF hospitalizations (P=0.003). ACHD HF hospitalization was associated with longer length of stay (ACHD HF versus non‐ACHD HF, 7.2±0.09 versus 6.8±0.02 days; P<0.0001), greater procedural burden, and higher charges ($81 332±$1650 versus $52 050±$379; P<0.0001). ACHD HF hospitalization charges increased 258% during the study period ($26 533±$1816 in 1998 versus $94 887±$8310 in 2011; P=0.0002), more than double that for non‐ACHD HF (P=0.04). Patients with ACHD HF hospitalized in high‐volume ACHD centers versus others were more likely to undergo invasive hemodynamic testing (30.2±0.6% versus 20.7±0.5%; P<0.0001) and to receive cardiac resynchronization/defibrillator devices (4.7±0.3% versus 1.8±0.2%; P<0.0001) and mechanical circulatory support (3.9±0.2% versus 2.4±0.2%; P<0.0001).Conclusions ACHD‐related HF hospitalizations have increased dramatically in recent years and are associated with disproportionately higher costs, procedural burden, and health resource use.

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Section: Discussionmentioning

confidence: 99%

Hospitalization Trends and Health Resource Use for Adult Congenital Heart Disease–Related Heart Failure

Burchill

Gao

Kovacs

et al. 2018

JAHA

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“…These allow for the aggregation of large numbers of patients within or across health systems. 4 These data sets, which, in the United States, typically rely on International Classification of Disease (ICD) codes, are naturally suited to this purpose. ICD codes identify patient diagnoses and link them to specific patient encounters or procedures.…”

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confidence: 99%

Limited Accuracy of Administrative Data for the Identification and Classification of Adult Congenital Heart Disease

Khan

Ramsey

Ballard

et al. 2018

JAHA

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BackgroundAdministrative data sets utilize billing codes for research and quality assessment. Previous data suggest that such codes can accurately identify adults with congenital heart disease (CHD) in the cardiology clinic, but their use has yet to be validated in a larger population.Methods and ResultsAll administrative codes from an entire health system were queried for a single year. Adults with a CHD diagnosis code (International Classification of Diseases, Ninth Revision, (ICD‐9) codes 745–747) defined the cohort. A previously validated hierarchical algorithm was used to identify diagnoses and classify patients. All charts were reviewed to determine a gold standard diagnosis, and comparisons were made to determine accuracy. Of 2399 individuals identified, 206 had no CHD by the algorithm or were deemed to have an uncertain diagnosis after provider review. Of the remaining 2193, only 1069 had a confirmed CHD diagnosis, yielding overall accuracy of 48.7% (95% confidence interval, 47–51%). When limited to those with moderate or complex disease (n=484), accuracy was 77% (95% confidence interval, 74–81%). Among those with CHD, misclassification occurred in 23%. The discriminative ability of the hierarchical algorithm (C statistic: 0.79; 95% confidence interval, 0.77–0.80) improved further with the addition of age, encounter type, and provider (C statistic: 0.89; 95% confidence interval, 0.88–0.90).Conclusions ICD codes from an entire healthcare system were frequently erroneous in detecting and classifying CHD patients. Accuracy was higher for those with moderate or complex disease or when coupled with other data. These findings should be taken into account in future studies utilizing administrative data sets in CHD.

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“…There are numerous databases available to address public health knowledge gaps about CHDs across the lifespan [15]. Yet, there is little information available about secular trends of cardiac anomalies in adolescent populations and about their possible associated socio-demographic factors.…”

Section: Discussionmentioning

confidence: 99%

Cardiac anomalies and associated comorbidities in a large adolescent population

Fink

Machluf

Farkash

et al. 2017

International Journal of Adolescent Medicine and Health

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Abstract:Objective: To determine the prevalence, secular trends and associations of heart disease in a large unscreened, otherwise basically healthy, adolescent population. Subjects and methods: Cross-sectional study of the cardiac status of 113,694 adolescents from the northern district of Israel, who completed the profiling process between the ages of 16 and 19, including all essential measures over a 22-year period. Results of imaging were categorized as either isolated valvar or structural abnormalities, and their clinically significant subgroups defined prospectively. The findings were correlated with the socio-demographic and anthropometric data and non-cardiac health conditions. Results: Of those sent for echocardiography, 1257 (0.93% of the total population) had isolated valvar disease and 216 (0.19%) had structural abnormalities, with 20% of both groups considered significant. Females had lower prevalence of heart disease. There was peak prevalence in the second 5-year period. Tall subjects or a past history of rheumatic fever had more valvar abnormalities. Thin subjects or those with skeletal anomalies had more structural abnormalities. Significant valvar and structural anomalies were more common in subjects with learning disorders, endocrine disorders and diabetes mellitus. Fewer valvar abnormalities were diagnosed in obese subjects. Heart disease was more common in those with non-solid tumors. Conclusion: Appreciable numbers of potentially healthy adolescents were found to have heart disease. There appeared to be an association with body size, skeletal abnormalities and relatively common medical disorders, the cause of which remains to be determined in prospective studies that could change the way common adolescent disease should be followed.

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Databases for Congenital Heart Defect Public Health Studies Across the Lifespan

Cited by 26 publications

References 57 publications

Hospitalization Trends and Health Resource Use for Adult Congenital Heart Disease–Related Heart Failure

Hospitalization Trends and Health Resource Use for Adult Congenital Heart Disease–Related Heart Failure

Limited Accuracy of Administrative Data for the Identification and Classification of Adult Congenital Heart Disease

Cardiac anomalies and associated comorbidities in a large adolescent population

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