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Registries, Risk Calculators, and Risk-Adjusted Outcomes: Current Usage, Limitations, and Future Prospects

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Abstract

Small study sizes are a limiting factor in assessing outcome measures in pediatric cardiology. It is even more difficult to assess the outcomes of congenital catheterizations where the sample sizes are even smaller, particularly on a individual institutional level. The creation of multicenter registries is a method by which investigators can pool data to better assess quality and outcome measures of these procedures. No registry is perfect with several being available today, each with its own strengths and weaknesses. In addition, there are a multitude of methods currently used to assess quality and outcomes from the data contained in these registries, each having its own limitations as well. Nonetheless, multicenter registrities remain one of the best available options to improve the quality of care for pediatric interventional cardiac catheterization. Below, we provide an overview of the current state of quality assessment/improvement in pediatric interventional cardiology including a review of the available registrities and the metrics used to measure quality of care and outcomes.

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References

  1. Lee RI, Jones LW (1933) The fundamentals of good medical care. University of Chicago Press, Chicago

    Google Scholar 

  2. Io M (2001) Crossing the quality chasm: a new health system for the 21st century. The National Academies Press, Washington, DC

    Google Scholar 

  3. Galantowicz M, del Nido P, Hanley F, Gaynor JW (2017) Correspondence to the pediatric cardiology & heart surgery rankings. https://health.usnews.com/health-news/blogs/second-opinion/articles/2017-10-20/correspondence-on-the-pediatric-cardiology-heart-surgery-rankings. Accessed Apr 2019

  4. Tynan M, Finley JP, Fontes V, Hess J, Kan J (1990) Balloon angioplasty for the treatment of native coarctation: results of valvuloplasty and angioplasty of congenital anomalies registry. Am J Cardiol 65(11):790–792

    Article  CAS  PubMed  Google Scholar 

  5. Bergersen L, Marshall A, Gauvreau K et al (2010) Adverse event rates in congenital cardiac catheterization—a multi-center experience. Catheter Cardiovasc Interv 75(3):389–400

    PubMed  Google Scholar 

  6. Everett AD, Ringel R, Rhodes JF et al (2006) Development of the MAGIC congenital heart disease catheterization database for interventional outcome studies. J Interv Cardiol 19(2):173–177

    Article  PubMed  Google Scholar 

  7. Jenkins KJ, Beekman Iii RH, Bergersen LJ et al (2008) Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease—the perspective of cardiology. Cardiol Young 18(Suppl 2):116–123

    Article  PubMed  Google Scholar 

  8. Holzer R, Qureshi S, Ghasemi A et al (2010) Stenting of aortic coarctation: acute, intermediate, and long-term results of a prospective multi-institutional registry—congenital cardiovascular interventional study consortium (CCISC). Catheter Cardiovasc Interv 76(4):553–563

    Article  PubMed  Google Scholar 

  9. Everett AD, Jennings J, Sibinga E et al (2009) Community use of the amplatzer atrial septal defect occluder: results of the multicenter MAGIC atrial septal defect study. Pediatr Cardiol 30(3):240–247

    Article  PubMed  Google Scholar 

  10. Holzer RJ, Gauvreau K, Kreutzer J et al (2011) Balloon angioplasty and stenting of branch pulmonary arterues: adverse events and procedural characteristics—results of a multi-institutional registry. Circ Interv 4:287–296

    Article  Google Scholar 

  11. Holzer RJ, Gauvreau K, Kreutzer J, Hirsch R, Torres A, Bergersen L (2011) Safety and efficacy of balloon pulmonary valvuloplasty: a multicenter experience. JACC 80:663–672

    Google Scholar 

  12. Bergersen L, Gauvreau K, Foerster SR et al (2011) Catheterization for congenital heart disease adjustment for risk method (CHARM). JACC Interv 4:1037–1046

    Article  Google Scholar 

  13. Bergersen L, Gauvreau K, Marshall A et al (2011) Procedure-type risk categories for pediatric and congenital cardiac catheterization. Circ Cardiovasc Interv 4:188–194

    Article  PubMed  Google Scholar 

  14. Martin GR, Beekman RH, Ing FF et al (2010) The IMPACT registry: improving pediatric and adult congenital treatments. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu 13(1):20–25

    Article  PubMed  Google Scholar 

  15. Jayaram N, Beekman RH 3rd, Benson L et al (2015) Adjusting for risk associated with pediatric and congenital cardiac catheterization: a report from the NCDR IMPACT registry. Circulation 132(20):1863–1870

    Article  PubMed  PubMed Central  Google Scholar 

  16. Nykanen DG, Forbes TJ, Du W et al (2016) CRISP: catheterization RISk score for pediatrics: a report from the congenital cardiac interventional study consortium (CCISC). Catheter Cardiovasc Interv 87(2):302–309

    Article  PubMed  Google Scholar 

  17. Hill KD, Du W, Fleming GA et al (2019) Validation and refinement of the catheterization RISk score for pediatrics (CRISP score): an analysis from the congenital cardiac interventional study consortium. Catheter Cardiovasc Interv 93(1):97–104

    Article  PubMed  Google Scholar 

  18. Brown DW, Dipilato AE, Chong EC, Lock JE, McElhinney DB (2010) Aortic valve reinterventions after balloon aortic valvuloplasty for congenital aortic stenosis intermediate and late follow-up. J Am Coll Cardiol 56(21):1740–1749

    Article  PubMed  Google Scholar 

  19. Holzer RJ, Cheatham JP (2010) Shifting the balance between aortic insufficiency and residual gradients after balloon aortic valvuloplasty. J Am Coll Cardiol 56(21):1750–1751

    Article  PubMed  Google Scholar 

  20. Lin CH, Hegde S, Marshall AC et al (2014) Incidence and management of life-threatening adverse events during cardiac catheterization for congenital heart disease. Pediatr Cardiol 35(1):140–148

    Article  PubMed  Google Scholar 

  21. OByrne ML, Silber JH, Kennedy KF, et al. (2018) Failure to rescue as an outcome metric in the pediatric and congenital cardiac catheterization laboratory: an analysis of data the improving adult and congenital treatment (IMPACT) registry. Circulation 138:A11788.

    Google Scholar 

  22. Gibbs JL, Monro JL, Cunningham D, Rickards A (2004) Survival after surgery or therapeutic catheterisation for congenital heart disease in children in the United Kingdom: analysis of the central cardiac audit database for 2000–1. BMJ 328(7440):611

    Article  PubMed  PubMed Central  Google Scholar 

  23. McElhinney DB, Quartermain MD, Kenny D, Alboliras E, Amin Z (2016) Relative risk factors for cardiac erosion following transcatheter closure of atrial septal defects: a case-control study. Circulation 133(18):1738–1746

    Article  PubMed  Google Scholar 

  24. Backes CH, Bergersen L, Rome JJ et al (2015) Quality metrics in cardiac catheterization for congenital heart disease: utility of 30-day mortality. Catheter Cardiovasc Interv 85(1):104–110

    Article  PubMed  Google Scholar 

  25. Forbes TJ, Kim DW, Du W et al (2011) Comparison of surgical, stent, and balloon angioplasty treatment of native coarctation of the aorta: an observational study by the CCISC (congenital cardiovascular interventional study consortium). J Am Coll Cardiol 58(25):2664–2674

    Article  PubMed  Google Scholar 

  26. Forbes TJ, Garekar S, Amin Z et al (2007) Procedural results and acute complications in stenting native and recurrent coarctation of the aorta in patients over 4 years of age: a multi-institutional study. Catheter Cardiovasc Interv 70(2):276–285

    Article  PubMed  Google Scholar 

  27. Holzer R, Beekman R, Benson L et al (2016) Characteristics and safety of interventions and procedures performed during catheterisation of patients with congenital heart disease: early report from the national cardiovascular data registry. Cardiol Young 26(6):1202–1212

    Article  PubMed  Google Scholar 

  28. O’Byrne ML, Kennedy KF, Jayaram N et al (2019) Failure to rescue as an outcome metric for pediatric and congenital cardiac catheterization laboratory programs: analysis of data from the IMPACT registry. J Am Heart Assoc 8(21):e013151

    PubMed  PubMed Central  Google Scholar 

  29. Asoh K, Hickey E, Dorostkar PC et al (2009) Outcomes of emergent cardiac catheterization following pediatric cardiac surgery. Catheter Cardiovasc Interv 73(7):933–940

    Article  PubMed  Google Scholar 

  30. Moore JW, Vincent RN, Beekman RH 3rd et al (2014) Procedural results and safety of common interventional procedures in congenital heart disease: initial report from the national cardiovascular data registry. J Am Coll Cardiol 64(23):2439–2451

    Article  PubMed  Google Scholar 

  31. Vincent RN, Moore J, Beekman RH et al (2015) Procedural characteristics and adverse events in diagnostic and interventional catheterizations in pediatric and congenital heart disease: initial report from the IMPACT registry. Cardiol Yong 26:70–78

    Article  Google Scholar 

  32. Dehmer GJ, Jennings J, Madden RA et al (2016) The national cardiovascular data registry voluntary public reporting program: an interim report from the NCDR public reporting advisory group. J Am Coll Cardiol 67(2):205–215

    Article  PubMed  Google Scholar 

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Authors and Affiliations

  1. NewYork-Presbyterian Komansky Children’s Hospital, New York, USA

    Ralf J. Holzer & Jeffrey D. Dayton

  2. Weill Cornell Medicine, New York, USA

    Ralf J. Holzer & Jeffrey D. Dayton

  3. David Wallace – Starr Foundation, Division of Pediatric Cardiology, Pediatric Cardiac Catheterization, NewYork-Presbyterian Komansky Children’s Hospital, New york, USA

    Ralf J. Holzer

  4. Department of Pediatrics, 525 East 68th Street, Room F-677, New York, NY, 10065, USA

    Jeffrey D. Dayton

Authors
  1. Ralf J. Holzer
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  2. Jeffrey D. Dayton
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Correspondence to Ralf J. Holzer.

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Holzer, R.J., Dayton, J.D. Registries, Risk Calculators, and Risk-Adjusted Outcomes: Current Usage, Limitations, and Future Prospects. Pediatr Cardiol 41, 443–458 (2020). https://doi.org/10.1007/s00246-020-02300-7

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  • DOI: https://doi.org/10.1007/s00246-020-02300-7

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