Skip to main content

Advertisement

Log in

Accuracy of Administrative Data for Detection and Categorization of Adult Congenital Heart Disease Patients from an Electronic Medical Record

  • Original Article
  • Published:
Pediatric Cardiology Aims and scope Submit manuscript

Abstract

Diagnostic codes used in healthcare administration have been employed extensively in clinical research to identify target patient populations, including demonstration of important clinical outcomes among adults with congenital heart disease. However, little is known about the reliability of code-derived data in this context. We sought to determine the accuracy of International Classification of Disease-9th Revision (ICD-9) diagnoses and the reliability of retrieval algorithms in adults with congenital heart disease (ACHD). Pilot testing of a hierarchical algorithm to identify ACHD patients and determine their principle congenital diagnosis was performed. A revised algorithm was then applied retrospectively to a sample of all outpatients seen by providers who see general cardiology and ACHD patients. Using all ICD-9 codes available from any encounter, accuracy for detection and categorization of sub-types were compared to physician chart review. After initial testing on 334 patients, the revised algorithm was applied to 740 patients. The sensitivity and specificity for ACHD patient identification from this specialty clinic population were 99 and 88 %, respectively. Of 411 (56 %) non-ACHD patients, 49 were incorrectly categorized as ACHD by the algorithm. Of ACHD patients, 326 of 329 were correctly identified by diagnostic codes and categorization of ACHD defect sub-type was correct in 263 (80 %). Administrative data can be used for identification of ACHD patients based on ICD-9 codes with excellent sensitivity and reasonable specificity. Accurate categorization that would be utilized for quality indicators by ACHD defect type is less robust. Additional testing should be done using non-referral populations.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Fig. 1

Similar content being viewed by others

References

  1. Baraona F, Gurvitz M, Landzberg MJ, Opotowsky AR (2013) Hospitalizations and mortality in the United States for adults with down syndrome and congenital heart disease. Am J Cardiol 111(7):1046–1051. doi:10.1016/j.amjcard.2012.12.025

    Article  PubMed  Google Scholar 

  2. Beland MJ, Jacobs JP, Tchervenkov CI, Franklin RC, International Working Group for M, Coding of Nomenclatures for P, Congenital Heart D (2002) Report from the Executive of The International Working Group for mapping and coding of nomenclatures for paediatric and congenital heart disease. Cardiol Young 12(5):425–430

    Article  PubMed  Google Scholar 

  3. Bergersen L, Giroud JM, Jacobs JP, Franklin RC, Beland MJ, Krogmann ON, Aiello VD, Colan SD, Elliott MJ, Gaynor JW, Kurosawa H, Maruszewski B, Stellin G, Tchervenkov CI, Walters HL, Weinberg P, Everett AD (2011) Report from The International Society for Nomenclature of Paediatric and Congenital Heart Disease: cardiovascular catheterisation for congenital and paediatric cardiac disease (Part 2 - nomenclature of complications associated with interventional cardiology). Cardiol Young 21(3):260–265. doi:10.1017/S1047951110001861

    Article  PubMed  Google Scholar 

  4. Bergersen L, Everett AD, Giroud JM, Martin GR, Franklin RC, Beland MJ, Krogmann ON, Aiello VD, Colan SD, Elliott MJ, Gaynor JW, Kurosawa H, Maruszewski B, Stellin G, Tchervenkov CI, Walters HL 3rd, Weinberg P, Jacobs JP (2011) Report from The International Society for Nomenclature of Paediatric and Congenital Heart Disease: cardiovascular catheterisation for congenital and paediatric cardiac disease (Part 1—procedural nomenclature). Cardiol Young 21(3):252–259. doi:10.1017/S104795111000185X

    Article  PubMed  Google Scholar 

  5. Bernier M, Marelli AJ, Pilote L, Bouchardy J, Bottega N, Martucci G, Therrien J (2010) Atrial arrhythmias in adult patients with right- versus left-sided congenital heart disease anomalies. Am J Cardiol 106(4):547–551. doi:10.1016/j.amjcard.2010.03.068

    Article  PubMed  Google Scholar 

  6. Bouchardy J, Therrien J, Pilote L, Ionescu-Ittu R, Martucci G, Bottega N, Marelli AJ (2009) Atrial arrhythmias in adults with congenital heart disease. Circulation 120(17):1679–1686. doi:10.1161/CIRCULATIONAHA.109.866319

    Article  PubMed  Google Scholar 

  7. Caddell KA, Diggs BS, de la Cruz JS, Walker W, Ehieli E, Karamlou T, Ungerleider RM, Welke KF (2011) Common ground: measuring intrainstitutional mortality among pediatric surgical procedures. Surgery 149(1):7–14. doi:10.1016/j.surg.2010.03.005

    Article  PubMed  Google Scholar 

  8. Chung CP, Rohan P, Krishnaswami S, McPheeters ML (2013) A systematic review of validated methods for identifying patients with rheumatoid arthritis using administrative or claims data. Vaccine 31(Suppl 10):K41–K61. doi:10.1016/j.vaccine.2013.03.075

    Article  PubMed  Google Scholar 

  9. Fan J, Arruda-Olson AM, Leibson CL, Smith C, Liu G, Bailey KR, Kullo IJ (2013) Billing code algorithms to identify cases of peripheral artery disease from administrative data. J Am Med Inform Assoc 20(e2):e349–e354. doi:10.1136/amiajnl-2013-001827

    Article  PubMed Central  PubMed  Google Scholar 

  10. Franklin RC, Jacobs JP, Tchervenkov CI, Beland MJ (2002) Bidirectional crossmap of the short lists of the European Paediatric Cardiac Code and the International Congenital Heart Surgery Nomenclature and Database Project. Cardiol Young 12(5):431–435

    Article  PubMed  Google Scholar 

  11. Gurvitz M, Valente AM, Broberg C, Cook S, Stout K, Kay J, Ting J, Kuehl K, Earing M, Webb G, Houser L, Opotowsky A, Harmon A, Graham D, Khairy P, Gianola A, Verstappen A, Landzberg M, Alliance for Adult Research in Congenital C, Adult Congenital Heart A (2013) Prevalence and predictors of gaps in care among adult congenital heart disease patients: HEART-ACHD (The Health, Education, and Access Research Trial). J Am Coll Cardiol 61 (21):2180–2184. doi:10.1016/j.jacc.2013.02.048

  12. Gurvitz M, Marelli A, Mangione-Smith R, Jenkins K (2013) Building quality indicators to improve care for adults with congenital heart disease. J Am Coll Cardiol 62(23):2244–2253. doi:10.1016/j.jacc.2013.07.099

    Article  PubMed  Google Scholar 

  13. Hoffman JI, Kaplan S, Liberthson RR (2004) Prevalence of congenital heart disease. Am Heart J 147(3):425–439

    Article  PubMed  Google Scholar 

  14. Karamlou T, Diggs BS, Welke K, Tibayan F, Gelow J, Guyton SW, Slater MS, Broberg C, Song HK (2012) Impact of single-ventricle physiology on death after heart transplantation in adults with congenital heart disease. Ann Thorac Surg 94(4):1281–1287. doi:10.1016/j.athoracsur.2012.05.075 discussion 1287-1288

    Article  PubMed  Google Scholar 

  15. Mackie AS, Ionescu-Ittu R, Therrien J, Pilote L, Abrahamowicz M, Marelli AJ (2009) Children and adults with congenital heart disease lost to follow-up: who and when? Circulation 120(4):302–309. doi:10.1161/CIRCULATIONAHA.108.839464

    Article  PubMed  Google Scholar 

  16. O’Leary JM, Siddiqi OK, de Ferranti S, Landzberg MJ, Opotowsky AR (2013) The changing demographics of congenital heart disease hospitalizations in the United States, 1998 Through 2010. JAMA J Am Med Assoc 309(10):984–986. doi:10.1001/jama.2013.564

    Article  Google Scholar 

  17. Opotowsky AR, Siddiqi OK, Webb GD (2009) Trends in hospitalizations for adults with congenital heart disease in the U.S. J Am Coll Cardiol 54(5):460–467

    Article  PubMed  Google Scholar 

  18. Taneja C, Berger A, Inglese GW, Lamerato L, Sloand J, Wolff GG, Sheehan M, Oster G (2014) Can dialysis patients be accurately identified using healthcare claims data? Perit Dial Int. doi:10.3747/pdi.2012.00328

    PubMed  Google Scholar 

  19. Warnes CA, Williams RG, Bashore TM, Child JS, Connolly HM, Dearani JA, del Nido P, Fasules JW, Graham TP, Jr., Hijazi ZM, Hunt SA, King ME, Landzberg MJ, Miner PD, Radford MJ, Walsh EP, Webb GD, Smith SC, Jr., Jacobs AK, Adams CD, Anderson JL, Antman EM, Buller CE, Creager MA, Ettinger SM, Halperin JL, Hunt SA, Krumholz HM, Kushner FG, Lytle BW, Nishimura RA, Page RL, Riegel B, Tarkington LG, Yancy CW, American College of C, American Heart Association Task Force on Practice G, American Society of E, Heart Rhythm S, International Society for Adult Congenital Heart D, Society for Cardiovascular A, Interventions, Society of Thoracic S (2008) ACC/AHA 2008 guidelines for the management of adults with congenital heart disease: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (Writing Committee to Develop Guidelines on the Management of Adults With Congenital Heart Disease). Developed in Collaboration With the American Society of Echocardiography, Heart Rhythm Society, International Society for Adult Congenital Heart Disease, Society for Cardiovascular Angiography and Interventions, and Society of Thoracic Surgeons. J Am Coll Cardiol 52 (23):e143–263. doi:10.1016/j.jacc.2008.10.001

  20. Welke KF, Karamlou T, Diggs BS (2008) Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease–a comparison of administrative and clinical data. Cardiol Young 18(Suppl 2):137–144. doi:10.1017/S1047951108002837

    Article  PubMed  Google Scholar 

  21. Williams DJ, Shah SS, Myers A, Hall M, Auger K, Queen MA, Jerardi KE, McClain L, Wiggleton C, Tieder JS (2013) Identifying pediatric community-acquired pneumonia hospitalizations: accuracy of administrative billing codes. JAMA pediatr 167(9):851–858. doi:10.1001/jamapediatrics.2013.186

    Article  PubMed Central  PubMed  Google Scholar 

  22. Yeung E, Kay J, Roosevelt GE, Brandon M, Yetman AT (2008) Lapse of care as a predictor for morbidity in adults with congenital heart disease. Int J Cardiol 125(1):62–65. doi:10.1016/j.ijcard.2007.02.023

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

This project was funded by the National Heart, Lung, and Blood Institute through the American Recovery and Reinvestment Act (2009) Limited Competition (1 RC4HL104831).

Ethical Standards

The study was approved by the institutional review board of Oregon Health & Science University. Informed consent was not required since identifying patient information was removed.

Conflict of interest

The authors declare that they have no conflict of interest.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Joel McLarry.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Broberg, C., McLarry, J., Mitchell, J. et al. Accuracy of Administrative Data for Detection and Categorization of Adult Congenital Heart Disease Patients from an Electronic Medical Record. Pediatr Cardiol 36, 719–725 (2015). https://doi.org/10.1007/s00246-014-1068-2

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00246-014-1068-2

Keywords

Navigation