Population‐based surveillance of congenital heart defects among adolescents and adults: surveillance methodology

Abstract

Background: Improved treatment of congenital heart defects (CHDs) has increased survival of persons with CHDs; however, no U.S. population-based systems exist to assess prevalence, healthcare utilization, or longer-term outcomes among adolescents and adults with CHDs. Methods: Novel approaches identified individuals aged 11–64 years who received healthcare with ICD-9-CM codes for CHDs at three sites: Emory University in Atlanta, Georgia (EU), Massachusetts Department of Public Health (MA), New York State Department of Health (NY) between January 1, 2008 (2009 for MA) and December 31, 2010. Case-finding sources included outpatient clinics; Medicaid and other claims data; and hospital inpatient, outpatient, and emergency visit data. Supplemental information came from state vital records (EU, MA), and birth defects registries (EU, NY). Demographics and diagnostic and procedural codes were linked, de-duplicated, and shared in a de-identified dataset. Cases were categorized into one of five mutually exclusive CHD severity groups; non-cardiac comorbidity codes were grouped into broad categories. Results: 73,112 individuals with CHD codes in healthcare encounters were identified. Primary data source type varied: clinics (EU, NY for adolescents), claims (MA), hospital (NY for adults). There was a high rate of missing data for some variables and data varied in format and quality. Some diagnostic codes had poor specificity for CHD ascertainment. Conclusions: To our knowledge, this is the first population-based, multi-site CHD surveillance among adolescents and adults in the U.S. Identification of people living with CHDs through healthcare encounters using multiple data sources was feasible, though data quality varied and linkage/de-duplication was labor-intensive.

Lost in the system? Transfer to adult congenital heart disease care—Challenges and solutions

“…The pilot study identified a total of 14 183 CHD patients who met the case definition. Glidewell et al explain the methodology of the pilot study . CHD codes were categorized into five groups similar to Marelli et al which integrates both severity and anatomy: severe, shunts, shunts plus valve, valve, and other CHD.…”

“…CHD codes were categorized into five groups similar to Marelli et al which integrates both severity and anatomy: severe, shunts, shunts plus valve, valve, and other CHD. The modified Marelli classification accounts for ICD‐9‐CM codes and simplifies this classification to severe and not severe as described by Glidewell et al Severe CHD was defined as a CHD usually requiring surgical or catheter intervention within the first year of life. The remaining codes were combined and classified as “not severe” for pilot study.…”

Predicting 30-day readmission after congenital heart surgery across the lifespan

“…To identify hospital readmissions, information from the STS database was linked to Emory University's population-based surveillance data repository for individuals with a CHD diagnosis that includes data from 2011-2013. The data are part of an expanded collaboration between Emory University and the Centers for Disease Control and Prevention 16 that includes Georgia Medicaid administrative claims, allowing for the follow-up of patient outcomes longitudinally across multiple sites in Georgia 16,17 .…”

“…Insurance payer status was categorised as public (including Medicare and Medicaid), private/employer-based, uninsured or self-pay, or other/unknown. Severity of CHD disease was classified as severe or not severe using a modified Marelli classification scheme, as outlined in Glidewell et al 16,18 . Co-morbidities of interest were identified using ICD-9-CM codes and were classified as cardiac, pulmonary, pulmonary hypertension, renal, hepatic, neurologic, haematologic, genetic syndrome, nutritional (specifically, overweight/obesity, underweight, or failure to thrive), or endocrine disease.…”

Inpatient admissions and costs for adolescents and young adults with congenital heart defects in New York, 2009-2013

“…The eight HSAs for New York are Western NY, Finger Lakes, Central NY, NY-Penn, Northeastern NY, Mid-Hudson, New York City (NYC), and Nassau-Suffolk. Eligible CHD ICD-9-CM diagnosis codes for each person were categorized into five hierarchical, mutually exclusive severity groups (from top to bottom of hierarchy: severe, shunt + valve, shunt, valve, and other) considering anatomy and hemodynamic severity (8). A dichotomous severe (severe only) and non-severe (shunt + valve, shunt, valve, and other) CHD categorization scheme was also employed for select analyses.…”