Population Surveillance of Adolescents and Adults with Congenital Heart Disease

In 2015, the Colorado School of Public Health and University of Colorado Department of Cardiology assembled a team of epidemiologists, cardiologists, health informaticians and patient advocates to develop a state-wide surveillance system of adolescents and adults with congenital heart defects (CHD) in Colorado. The Colorado All Payer Claims Database (CO ACPD) was an integral data source for the project, along with electronic health records (EHR) from four major health care systems that serve the state.

Congenital heart defects are the most common birth defect in the United States and advances in surgical interventions during infancy have led to dramatically decreased mortality and a demographic shift in persons living with these birth defects to older ages. However, congenital heart disease is a lifelong co-morbidity associated with high health care utilization and for many patients, repeated surgical interventions.  The prevalence of adolescents and adults living with congenital heart disease in the United States was previously unknown and Colorado’s surveillance system, along with systems developed in four other geography based sites across the nation generated findings to understand healthcare utilization patterns, health disparities and long-term health outcomes for this growing population.

The completion of this project allowed the opportunity to help determine the prevalence of adolescents and adults living with congenital heart defects in Colorado. Researchers were able to take this an additional step further to determine the relationship between socioeconomic factors associated with health outcomes for individuals with congenital heart disease as well the exploration of the burden of mental health conditions among patients with CHD. The project developed and evaluated a novel record linkage methodology to de-duplicate individuals across EHR and insurance claims data sources.  It also served as a platform to assess and correct for biases introduced into public health surveillance systems for complex chronic diseases that rely on EHR and claims data.

View publications from this Change Agent

  • Glidewell JM, Farr SL, Book WM, Botto L, Li JS, Soim AS, Downing KF, Riehle-Colarusso T, D’Ottavio AA, Feldkamp ML, Khanna AD, Raskind-Hood CL, Sommerhalter KM, Crume TL.  Individuals aged 1-64 years with documented congenital heart defects at healthcare encounters, five S. surveillance sites, 2011-13.  American Heart Journal 28:100-108.  https://doi.org/10.1016/j.ahj.2021.04.007. 2021
  • Tillman AR*, Colburn KL, Scott KA, Davidson AJ, Khanna A, Kao D, McKenzie L, Ong T, Rausch CM, Duca LM, Daley MF, Coleman S, Costa E 3rd, Crume TL.  Associations between socioeconomic context and congenital heart disease in adolescents and adults. Am J Cardiol. 15:139-105: doi: 10.1016/j.amjcard.2020.10.040. PMID:  2021.
  • Khanna AD*, Duca LM, Kay JD, Shore J, Kelly SL, Crume T.  Prevalence of mental illness in adolescents and adults with congenital heart disease from the Colorado Congenital Heart Defect Surveillance System.  Am J Cardiol. 124:618-626. 2019
  • Ong TC, Duca LM*, Kahn MG, Crume TL.  A hybrid approach to record linkage using a combination of deterministic and probabilistic methodology.  J Am Med Inform Assoc.27(4):505-513doi: 10.1093/jamia/ocz232. PubMed PMID: 2020
  • Crume TL, Duca LM, Ong T, Kraus E, Scott K, Khanna A, Kao D, Rausch CM, McKenzie L, Daley MF, Coleman S, Kahn MG, Costa E 3rd, Davidson AJ.  Population-level surveillance of congenital heart defects among adolescents and adults in Colorado: Implications of record linkage. Am Heart J. 226:75-84doi: 10.1016/j.ahj.2020.04.008.  PubMed PMID: 32526532. 2020
  • Duca LM*, Pyle L, Khanna AD, Ong T, Kahn MG, DiGuiseppi C, Scott K, Daley MF, Costa E 3rd, Davidson AJ, Crume TL.  Estimating the prevalence of congenital heart disease among adolescents and adults in Colorado adjusted for incomplete case ascertainment. Am Heart J 221:95-105doi:0.1016/j.ahj.2019.11.012. PubMed PMID: 31955128. 2020