Jill Glidewell1, Wendy Book2, Cheryl Raskind-Hood2, Carol Hogue2, Julie E Dunn3, Michelle Gurvitz4, Al Ozonoff4,5, Claire McGarry6, Alissa Van Zutphen6,7, George Lui8, Karrie Downing1,9, Tiffany Riehle-Colarusso1. 1. Centers for Disease Control and Prevention (CDC), National Center on Birth Defects and Developmental Disabilities, Atlanta, Georgia. 2. Emory University, Atlanta, Georgia. 3. Massachusetts Department of Public Health, Boston, Massachusetts. 4. Boston Children's Hospital, Boston, Massachusetts. 5. Harvard Medical School, Boston, Massachusetts. 6. New York State Department of Health, Albany, New York. 7. University at Albany School of Public Health, Rensselaer, New York. 8. Stanford University School of Medicine, Stanford, California. 9. Oak Ridge Institute for Science and Education, Oak Ridge, Tennessee.
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.
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.
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Authors: M Jill Glidewell; Sherry L Farr; Wendy M Book; Lorenzo Botto; Jennifer S Li; Aida S Soim; Karrie F Downing; Tiffany Riehle-Colarusso; Alfred A D'Ottavio; Marcia L Feldkamp; Amber D Khanna; Cheryl L Raskind-Hood; Kristin M Sommerhalter; Tessa L Crume Journal: Am Heart J Date: 2021-05-03 Impact factor: 5.099
Authors: Wan-Hsiang Hsu; Kristin M Sommerhalter; Claire E McGarry; Sherry L Farr; Karrie F Downing; George K Lui; Ali N Zaidi; Daphne T Hsu; Alissa R Van Zutphen Journal: Birth Defects Res Date: 2020-09-29 Impact factor: 2.661
Authors: Michelle Gurvitz; Julie E Dunn; Ami Bhatt; Wendy M Book; Jill Glidewell; Carol Hogue; Angela E Lin; George Lui; Claire McGarry; Cheryl Raskind-Hood; Alissa Van Zutphen; Ali Zaidi; Kathy Jenkins; Tiffany Riehle-Colarusso Journal: J Am Coll Cardiol Date: 2020-07-14 Impact factor: 27.203